Short report: Initial pilot of a brief career development program for autistic young adults

Walking fosters health and sustainability, yet autistic adults’ urban walkability remains underexplored. This pilot study compared walking behaviours among UK-based young neurotypical adults (n = 30; 18–39 years), young autistic adults (n = 30; 18–39 years), and older neurotypical adults (n = 24; 65+ years). Participants reported whether they walked to eight destination types during daylight and after dark. Logistic regression assessed group, gender, and time-of-day effects; McNemar tests compared walking to essential (e.g. work, shopping) versus discretionary (e.g. leisure, social) destinations within young groups. Autistic and older adults had similarly reduced odds of walking to local destinations compared to young neurotypicals (OR ≈ 0.53, p < 0.001). Nighttime walking was markedly lower across all groups (OR ≈ 0.35, p < 0.001). Young autistic and neurotypical adults did not differ for essential trips (p = 0.064) but autistic adults walked less for discretionary trips (χ2 = 10.21, p = 0.001). Young autistic adults exhibit walking patterns similar to over65s, avoiding nonessential outings likely due to sensory sensitivities and social and environmental unpredictability. Incorporating sensory-friendly urban features, such as clear wayfinding, quiet zones, consistent lighting, may enhance both essential and leisure walking among autistic populations, promoting inclusive active travel and public health.

BackgroundHealthcare independence refers to an individual’s ability to participate in and manage their healthcare by using specific skills like communicating with providers and scheduling appointments. Understanding healthcare independence among autistic young adults is important to designing healthcare systems that provide equitable support for autistic people throughout their lives. ObjectiveTo quantify changes in autistic adults’ healthcare independence over time and understand factors associated with change in healthcare independence. MethodsWe administered a measure of healthcare skills, the Transition Readiness Assessment Questionnaire (TRAQ), to n = 27 autistic young adults who provided a self-report, and n = 21 autistic young adults who participated via proxy-report by supporters, at one autism-specialized primary care clinic. Participants completed the TRAQ at baseline, six months, and 12 months. We used repeated measures generalized linear mixed models to quantify changes in healthcare independence over time, controlling for demographic factors, executive functioning, restrictive and repetitive behaviors, and number of clinic visits. To understand factors associated with change in healthcare independence, we completed follow-up semi-structured interviews with n = 6 autistic young adults and n = 5 supporters of autistic young adults. ResultsAutistic young adults who participated via self-report showed statistically significantly increases in healthcare independence between baseline and 12 months and between six months and 12 months, and significant increases on most TRAQ subdomains over time (e.g., appointment keeping, managing medications). Autistic young adults who participated via proxy-report showed no significant changes in healthcare independence over time, and significant improvement on the management of activities subdomain between baseline and 12 months. Changes in healthcare independence were associated with interactions with providers, individual health changes, consistent support needs, and community resources. ConclusionsAt one autism-specialized primary care clinic, some autistic young adults may demonstrate improvements in healthcare independence, but other autistic young adults may require additional support strategies to increase healthcare independence. Future studies among larger samples are needed to obtain generalizable understanding of healthcare independence for autistic adults.

Becoming an adult comes with education, work, living, and health-related transitions. Health care transition (HCT) services help adolescents prepare for a smooth transition to adult care, ensure health insurance retention, and promote adolescents' independent management of health care and life needs. Lack of HCT services can result in negative outcomes such as unmet needs, overmedication, and loss of decision-making authority. Autistic young adults (AYA) are half as likely to receive HCT services compared with special needs young adults. Furthermore, there are no HCT readiness measures that address the unique needs of AYA. This study used a mixed-methods approach to develop and test a holistic caregiver-reported measure of HCT readiness for AYA Health-Related Independence (HRI). The phases used to create and test the HRI measure included: (1) construct and question topic development through qualitative data collection with AYA and caregivers; (2) question development with clinicians and caregivers; and (3) initial question testing utilizing cognitive interviews and pretesting of the instrument with caregivers. Measure constructs were developed based on qualitative findings from AYA (n = 27) and caregivers (n = 39). The researchers identified 12 themes related to HRI from the data. Next, questions were developed for each theme by caregivers (n = 5) and clinicians (n = 25). Finally, questions and the survey format were tested using caregiver feedback in the form of cognitive interviews (n = 15) and pretests (n = 21). The final version of the caregiver-reported HRI measure included 8 constructs and 58 questions. The development of the HRI measure was a comprehensive and iterative process. This article highlights the measurement development process and its potential impact on AYA, caregivers, and clinicians. Why was this study done?: Health care transition services help youth keep their health insurance, transition to an adult doctor smoothly, and promote independence. To date, there is no health care transition intervention for autistic young adults. Few studies have examined how to prepare autistic young adults to manage their health and self-care needs and the transition to an adult model of care. We wanted to fill in these gaps by creating a measure of health care transition readiness for autistic young adults.What was the purpose of this study?: The purpose of the study was to develop the Health-Related Independence measure based on autistic young adult and caregiver input. We define Health-Related Independence as a young adult's ability to manage their health, healthcare, and safety needs. We also wanted to examine the measure to make sure it was easy to read, made sense, and was easy to answer.What did the researchers do?: We used a mixed-methods approach to develop and test the Health-Related Independence measure. There were three parts to the study: (1) we conducted individual interviews with autistic young adults and focus groups with caregivers to understand what topics should be included in the measure, (2) clinicians and caregivers then used those topics to create specific survey questions, (3) we conducted interviews and online pretest of the measure with caregivers.What were the results of the study?: The autistic young adults and caregivers identified twelve topics/themes to include in the Health-Related Independence Measure. Caregiver feedback helped make the measure shorter and easier to understand and complete. The final version of the caregiver-reported HRI measure included 58 questions.What do these findings add to what was already known?: We learned that young adults and caregivers have a broad understanding of health-related independence such as safety and sexuality/relationship knowledge. There weren't any measures to capture these ideas. This study created an important new measure that can be used in healthcare clinics, schools, and at home.What are potential weaknesses in the study?: This study aimed to work with autistic young adults to develop the Health-Related Independence measure, but due to funding and study limitations, we only included young adults in the 1st phase of the study. Caregivers were used as proxy reporters in phases 2 and 3. Not including autistic young adults in phases 2 and 3 was a weakness of the study. Future research should aim to fully incorporate young adults into the research process. Their views should inform the development of the qualitative interview guides and all portions of the study.How will these findings help autistic adults now or in the future?: The Health-Related Independence measure can help caregivers and health care providers identify areas in which the autistic young adults are successful and areas of needed improvement to assist in the successful transition to adult care and adult life. The authors are currently working on a study proposal to validate the Health-Related Independence measure as a self-assessment tool for young adults to take themselves.

Compared with their non-licensed peers, licensed autistic adults appear to report more positive outcomes in objective measures of quality of life, particularly participation in activities outside of the home. We examined if this is due to individual differences/factors or the ability to independently drive. We conducted a prospective follow-up survey study of 16-21 years old in the United States and compared engagement in activities outside of the home over time by licensing status. Our final sample included 111 young adults; at follow-up, 62% did not have a permit or a license, 18% had obtained a permit, and 20% were licensed. Generally, travel patterns were consistent, except for reported increases in employment. The lack of overall differences across groups over time suggests individual differences in resources, barriers/facilitators to traveling, or general characteristics may underlie objective measures of quality of life rather than the obtainment of a license. Furthermore, regardless of licensure status, most respondents were not traveling everywhere they wanted to go, and nearly 80% were interested in a transportation modality they did not currently use. Thus, there is a continued need to support autistic adults' independent use of various transportation modalities.Lay abstractShort Report: Obtaining a driver's license may not change autistic young adults' engagement in activities outside of the homeAutistic adults who have a driver's license say they participate in activities outside of their home, like employment or socializing, more often than those who do not have a license. It is unclear if this is because these adults can drive or if people who obtain licenses are different in some way than those who do not obtain a license. To examine this, we administered multiple surveys to a group of autistic young adults (16-21 years old) to see if their travel patterns changed after obtaining a license. In total, 111 young adults completed our surveys. Generally, we did not see changes in adults' travel patterns, regardless of if they obtained a license or not. The only change was an increase in employment over time among young adults who never obtained a learner's permit/license and those who obtained a license. Overall, our findings suggest that individual differences may be why some adults are engaged in activities outside of the home more often than others. We also found that most adults in our sample were not traveling everywhere they wanted to go or using all the modes of transportation they were interested in. This suggests more efforts are needed that improve autistic adults' independent mobility across transportation modes (e.g., driving, public transportation).

Autistic people have historically been described as incapable of developing a deeper sense of self-awareness, and autistic understandings of self-awareness have been largely disregarded. The aim of this study is to explore the way young autistic adults try to understand their functionality and who they are, or to develop their sense of self-awareness, in work and in private life contexts. In 12 qualitative interviews conducted with four autistic adults without learning difficulties, we identified a rich set of reflections on knowing and accepting oneself. The overarching theme of self-knowledge has three subthemes: learning from previous experiences, learning about oneself by securing the support of others, and understanding and accepting autistic functionality. The strategy of self-knowledge was used by these young adults to help them achieve functional lives in the work and private domains. Our results show that young autistic adults both actively explore and develop their self-awareness. We suggest that it is important for practitioners and employers working with autistic individuals to engage with their journeys of self-awareness as a vital part of understanding and supporting them.Lay abstractWhen researchers and professionals talk about autism, they commonly point out problems and risks with autism or being autistic. Several interventions are based on the idea of the problems and risks of autism. Another way of talking about autism is to point out autistic people’s strengths and strategies which they use to handle barriers and problems in their lives in order to live good lives on their own terms. In this article, the researchers explore how autistic young adults formulate their own difficulties, strengths and support needs in order to get right support from support people. To be able to formulate this, autistic people need to get to know oneself and one’s own way of functioning. Autistic own self-knowledge must be central when formal support people, such as social workers, formulate support and interventions aimed at helping autistic people, in order for the support/intervention to be helpful.

Background: Cognitively able autistic adults demonstrate low rates of employment due to social and vocational challenges. The current study aimed to examine changes in various areas among autistic young adults who participated in the 'Roim Rachok' ('Looking Ahead' in Hebrew) Training Course (RRTC). The course prepares young autistic adults for integration into military service as vocational soldiers. Methods: The study included 49 autistic participants who completed the RRTC in one of three vocational fields: Digital (n = 19), Technical (n = 9), and Visual (n = 21). Evaluations at the beginning and end of the course included adaptive behavior (Adaptive Behavior Assessment Scale 2nd Edition [ABAS-II]), autism symptom severity (Social Responsiveness Scale 2nd Edition [SRS-II]), and communication skills (Faux Pas; Empathy Quotient [EQ]; Friendship Quality Scale; Conversation task based on Yale in vivo Pragmatic Protocol [YiPP]).Results: The results revealed a significant Time effect for the self-reported ABAS-II conceptual, social, and practical subdomains, EQ empathy quotient subdomain, Faux Pas, and SRS-II social communication interaction scores. Accordingly, participants reported increasing their adaptive skills, emotional empathy, and the ability to detect and interpret awkward statements, and decreased in their social communication interaction symptoms, following the RRTC. No significant Time x Group interaction was found for any of the examined measures, meaning similar trends were observed in all three vocational groups. Conclusion: Following the RRTC, participants reported significant improvements in areas essential for their future integration as soldiers in the military and as employees in the vocational world. Implications of the study findings are discussed.

BackgroundAlexithymia, a personality trait characterized by difficulties interpreting emotional states, is commonly elevated in autistic adults, and a growing body of literature suggests that this trait underlies several cognitive and emotional differences previously attributed to autism. Although questionnaires such as the 20-item Toronto Alexithymia Scale (TAS-20) are frequently used to measure alexithymia in the autistic population, few studies have investigated the psychometric properties of these questionnaires in autistic adults, including whether differential item functioning (I-DIF) exists between autistic and general population adults.MethodsThis study is a revised version of a previous article that was retracted due to copyright concerns (Williams and Gotham in Mol Autism 12:1–40). We conducted an in-depth psychometric analysis of the TAS-20 in a large sample of 743 cognitively able autistic adults recruited from the Simons Foundation SPARK participant pool and 721 general population controls enrolled in a large international psychological study. The factor structure of the TAS-20 was examined using confirmatory factor analysis, and item response theory was used to generate a subset of the items that were strong indicators of a “general alexithymia” factor. Correlations between alexithymia and other clinical outcomes were used to assess the nomological validity of the new alexithymia score in the SPARK sample.ResultsThe TAS-20 did not exhibit adequate model fit in either the autistic or general population samples. Empirically driven item reduction was undertaken, resulting in an 8-item general alexithymia factor score (GAFS-8, with “TAS” no longer referenced due to copyright) with sound psychometric properties and practically ignorable I-DIF between diagnostic groups. Correlational analyses indicated that GAFS-8 scores, as derived from the TAS-20, meaningfully predict autistic trait levels, repetitive behaviors, and depression symptoms, even after controlling for trait neuroticism. The GAFS-8 also presented no meaningful decrement in nomological validity over the full TAS-20 in autistic participants.LimitationsLimitations of the current study include a sample of autistic adults that was majority female, later diagnosed, and well educated; clinical and control groups drawn from different studies with variable measures; only 16 of the TAS-20 items being administered to the non-autistic sample; and an inability to test several other important psychometric characteristics of the GAFS-8, including sensitivity to change and I-DIF across multiple administrations.ConclusionsThese results indicate the potential of the GAFS-8 to robustly measure alexithymia in both autistic and non-autistic adults. A free online score calculator has been created to facilitate the use of norm-referenced GAFS-8 latent trait scores in research applications (available at https://asdmeasures.shinyapps.io/alexithymia).

The autistic community has called for a neurodiversity-affirming perspective of autism. By asking autistic adults about their strengths and difficulties, we can expand our understanding of autism by challenging deficit-dominant narratives and moving towards strengths-informed support tailored to address challenges explicitly expressed by autistic individuals. A sample of 292 autistic adults recruited from the SPARK research match registry responded to the question "What are your strengths?", and 294 individuals responded to the question "What are your primary difficulties at this time?" as part of a larger study. We employed an inductive coding approach to analyze free-text responses and organized coded responses into themes. Participants most frequently reported Interpersonal Skills/Traits (43.8%) as a strength and Everyday Life Challenges (39.1%) as a difficulty. Specifically, the most frequently reported strengths were "Kind/Caring/Loving," "Smart/Intelligent," and "Perseverant/Resilient". The most frequently reported difficulties were "Socializing," "Executive Functioning," and "Co-occurring Mental Health Challenges." Reported strengths and difficulties varied widely among autistic adults, highlighting the heterogeneity of autistic experiences. Autistic adults reported strengths in interpersonal skills/traits and resilience that are not typically acknowledged in current literature. They also reported difficulties across multiple areas of life not directly connected to autism. Our findings expand ideas about what strengths autistic individuals have and advocate for wraparound supports to help autistic individuals access their strengths, reducing the burden of self-reliance through addressing unmet needs.

The purpose of this study was to examine the nature of speech disfluencies in autistic young adults and controls by using a wide-range disfluency classification of typical disfluencies (TD; i.e., filled pauses, revisions, abandoned utterances, and multisyllable word and phrase repetitions), stuttering-like disfluencies (SLD; i.e., sound and syllable repetitions, monosyllable word repetitions, prolongations, blocks, and broken words), and atypical disfluencies (AD; i.e., word-final prolongations and repetitions and atypical insertions). Thirty-two autistic young adults and 35 controls completed a narrative telling task based on socially complex events. Frequencies of total disfluencies, TD, SLD, AD and stuttering severity were compared between groups. The overall frequency of disfluencies was significantly higher in the autistic group and significant between-group differences were found for all disfluency categories. The autistic group produced significantly more revisions, filled pauses, and abandoned utterances, and each subtype of SLD and AD than the control group. In total, approximately every fourth autistic participants scored at least a very mild severity of stuttering, and every fifth produced more than three SLD per 100 syllables. Disfluent speech can be challenging for effective communication. This study revealed that the speech of autistic young adults was highly more disfluent than that of the controls. The findings provide information on speech disfluency characteristics in autistic young adults and highlight the importance of evaluating speech disfluency with a wide-range disfluency classification in autistic persons in order to understand their role in overall communication. The results of this study offer tools for SLPs to evaluate and understand the nature of disfluencies in autistic persons.

Previous social-pragmatic and narrative research involving autistic individuals has mostly focused on children. Little is known about how autistic adults and adults who have autistic traits but do not have a diagnosis of an autism spectrum disorder (ASD) interpret complex social situations and tell narratives about these situations. We asked 32 autistic young adults, 18 adults with autistic traits but no ASD diagnosis, and 34 non-autistic young adults to watch socially complex situations and freely tell narratives about what they thought was occurring in each situation. These narratives were analysed for how the participants had interpreted the situations and for the type of narratives they produced. We found that the groups had both similarities and differences. Regarding the differences, we found that the autistic adults and adults with autistic traits interpreted the situations differently from the non-autistic adults. The autistic adults found different aspects of the situations relevant, had different foci and placed greater importance on details than the non-autistic adults. The autistic adults and adults with autistic traits also differed from the non-autistic adults by having more detail- and event-focused narratives whereas the non-autistic adults were more likely to base their narratives on their own broad interpretations of the situations. Perceptual processing styles appeared to play a bigger role in interpreting the situations for the autistic adults and adults with autistic traits than the non-autistic adults. Our findings suggest that autistic adults and adults with autistic traits focus on different aspects in their social world than non-autistic adults.

Purpose There is evidence that childhood adversity is correlated with poor health outcomes across the lifespan. Resilience results when internal and external protective factors in childhood mitigate this relationship. However, among children on the autism spectrum, these relationships are understudied, and little is known about the characteristics and role of adversity and resilience in their in their lives. This study interprets these phenomena as experienced by autistic young adults. Methods Initially, we conducted community engagement with five members of the autism community who advised on the research question, research design, and analysis. Subsequently, four autistic young adults, three women and one non-binary, aged 19–27, were recruited to participate in semi-structured interviews via phone, video conference, and online chat. Credibility checking interviews followed data analysis. Results Through interpretative phenomenological analysis we identified themes related to the negative effects of adversity, including social disconnection, mental and emotional well-being, sense of self, and development into young adulthood. Resilience developed in places of refuge and identity and was evident in their transitions into young adulthood. Conclusion These findings provide direction for decreasing adversity and fostering resilience in children and adolescents on the autism spectrum.

ABSTRACTThis article explores autistic young adults' experiences of epistemic injustice in healthcare interactions where autism is invoked and a subject of misaligned sensemakings. We take a particular focus on hermeneutical injustice, which refers to the difficulty of understanding and communicating one's experiences due to gaps and biases in sensemaking resources. Earlier research concerning autistic individuals from this perspective is sparse and mostly theoretical. Our study addresses this gap by conducting abductive thematic analysis on interview and questionnaire data from Finnish autistic young adults. This approach enabled us to recognise biases and hierarchies, such as neuronormativity and epistemic hierarchies, while also describing a new, paradoxical kind of hermeneutical injustice not covered by earlier research. Our results indicate how the often‐intertwined forms of epistemic injustices are related to a lack of representativeness in how autism is understood as well as to how the exclusion of certain kinds of knowledge and knowers, along with the devaluations of expressive styles, impact autistic people's epistemic agency, identities and access to care. We argue for more inclusive epistemic approaches in healthcare that appreciate autistic contributions, recognise the diversity of autistic experience and expression, and challenge the reductive assumptions embedded in diagnostic and professional practices.

Autistic adults are substantially more likely to develop depression than individuals in the general population, and recent research has indicated that certain differences in thinking styles associated with autism may play a role in this association. Rumination, the act of thinking about the same thing over and over without a functional outcome, is a significant risk factor for depression in both autistic and non-autistic adults. However, little is known about how different kinds of rumination relate to each other and to depressive symptoms in the autistic population specifically. To fill this gap in knowledge, we recruited a large online sample of autistic adults, who completed questionnaire measures of both the tendency to ruminate and symptoms of depression. By examining the interacting network of rumination and depression symptoms, this study was able to identify particular aspects of rumination-such as thinking repetitively about one's guilty feelings or criticizing oneself-that may be particularly important in maintaining these harmful thought patterns in autistic adults. Although further study is needed, it is possible that the symptoms identified as most "influential" in the network may be particularly good targets for future interventions for mood and anxiety disorders in the autistic population.

The aim of this study was to evaluate the experience of autistic young adults aged 18 to 25 years old over a 12-month transition period from 2016 to 2017. Data was collected through a longitudinal repeated measures case series design with assessments conducted at 2 time points, at baseline then 12 months later. Assessments included self-report evaluations of transition planning and intervention received at high school, engagement in post-secondary education and access to employment, living circumstances, and social support. Examination of 9 cases showed family and social support was an important facilitator of successful transition whilst low independence was a risk factor associated with unsuccessful transition. In-depth analysis of cases showed a lack of engagement in post-secondary education and unemployment were associated with poor quality of life whilst skills development, work experience placements, and support from service providers were associated with improved quality of life. Implications of the findings highlight the need for educational and socially inclusive interventions to support the heterogeneity in individual, social, communication, and behavioural challenges in autistic young adults.

The aim of this study was to evaluate the experience of autistic young adults aged 18 to 25 years old over a 12-month transition period from 2016 to 2017. Data was collected through a longitudinal repeated measures case series design with assessments conducted at 2 time points, at baseline then 12 months later. Assessments included self-report evaluations of transition planning and intervention received at high school, engagement in post-secondary education and access to employment, living circumstances, and social support. Examination of 9 cases showed family and social support was an important facilitator of successful transition whilst low independence was a risk factor associated with unsuccessful transition. In-depth analysis of cases showed a lack of engagement in post-secondary education and unemployment were associated with poor quality of life whilst skills development, work experience placements, and support from service providers were associated with improved quality of life. Implications of the findings highlight the need for educational and socially inclusive interventions to support the heterogeneity in individual, social, communication, and behavioural challenges in autistic young adults.