Identification of Capabilities of Autistic Young Adults: Towards an Understanding of Autistic Flourishing.

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.

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.

Adaptive functioning describes the age-appropriate skills necessary for independent living. Research suggests that autistic children, adolescents, and adults who do not have an intellectual disability demonstrate adaptive functioning challenges relative to their intellectual ability. Thus, even though many of these individuals have the intellectual capacity to excel in mainstream educational and vocational settings, their adaptive functioning challenges may serve as an obstacle to independence. The research on adaptive functioning in autistic adults is focused on statistical analysis of standardized assessments (e.g. parent-report on multiple choice questionnaires). Qualitative research that examines the narratives of young adults and their parents is needed to better understand adaptive functioning in young adults and their resulting service needs. This study combined statistical analysis of standardized assessments with qualitative analysis of interview responses from autistic young adults without intellectual disability and their parents. Findings replicated previous reports of adaptive functioning challenges and identified influences on adaptive functioning development, consequences of independence, and service needs. Taken together, findings indicate the need for interventions and services that facilitate adaptive functioning development in autistic adolescents and young adults and provide insight into potential intervention targets and strategies.

Why was this program developed?: It is important to design and test support groups that aim to improve the well-being of autistic young adults (ages 16-25) during the transition to adulthood.If support groups are not codesigned, they are less likely to be considered acceptable by autistic people. By codesign, we mean different groups of people (e.g., autistic people, clinicians, researchers) working together to create something.In this study, our team of autistic young adults, clinicians, researchers, and an autism charity representative codesigned a program to support autistic young adults during the transition to adulthood. The program was developed because a UK charity-Ambitious about Autism-identified that there was a need for specific support for autistic young adults.What does the program do?: The program-called Understanding You, Discovering You-is designed to help autistic young adults embrace and understand their autistic identity. The program is designed to be delivered by two facilitators, one of whom is autistic, and includes up to 10 autistic young people at a time. Autistic young adults decided the content of the program, and how it was organized.How did the researchers evaluate the development of the new program?: In this article, we report our team's reflections about involving autistic young adults in the program's design, to guide the creation of similar projects in the future. We also gathered initial feedback about the program from program attendees to understand their experience and learn how to make the program better in the future.What were the early findings?: We identified the following three main things that were important when involving autistic young adults in the codesign of our program: good preparation, effective and respectful communication, and making sure the collaboration is meaningful. Program attendees reported that they liked learning about autism, found value in the social connections they made, and gained practical skills from the program. These findings tell us that codesigning programs with autistic people is a good way to make sure they are useful.What were the weaknesses of this project?: One weakness of this project was that only a small number of people filled out our postprogram evaluation, which meant that we did not get as much feedback as we would have liked.What are the next steps?: Our next steps will involve adjusting the program based on participant feedback before doing a larger and more rigorous evaluation of the program.How will this work help autistic adults now or in the future?: This work provides a valuable example of how diverse teams (which include autistic young adults) can work collaboratively to codesign support programs for autistic people.

Despite increasing knowledge of social communication skills of autistic peole, the interrelatedness of different skills such as non-linguistic comprehension, social inference and empathizing skills is not much known about. A better understanding of the complex interplay between different domains of social communication helps us to develop assessment protocols for individuals with social communication difficulties. To compare the performances of autistic young adults, young adults with autistic traits identified in childhood and control young adults in social communication tasks measuring non-linguistic comprehension, social inference and empathizing skills. In addition, to examine associations between the different social communication measures. Autistic young adults (n = 34), young adults with autistic traits (n = 19) and control young adults (n = 36) completed the extra- and paralinguistic scales of the Assessment Battery for Communication (ABaCo), the Faux Pas Recognition Test, Social-Pragmatic Questions (SoPra) and the Empathy Quotient (EQ). Group differences were found in the performance in the ABaCo, SoPra and EQ scores. Compared with the control young adults, autistic young adults scored lower. The performance of the young adults in the autistic traits group fell in between the other two groups. There were no group differences in the Faux Pas Recognition Test. The variability within the groups was large in all measurements. In the control group, there was a significant correlation between EQ and SoPra scores and between the Faux Pas and SoPra scores. In the autistic group, a significant correlation was found between Faux Pas and SoPra scores. Also, other patterns were observed but these were not statistically significant. The young adults with autistic traits fell in between the control and autistic young adults, highlighting the presence of the continuum in the terms of features of social communication. The results support other current research that suggests that theory of mind and other social communication skills may not be universally or widely impaired in all autistic individuals without cognitive deficits. Although all tasks examined social communication skills, only a small number of significant correlations were found between test scores. This highlights that clinical conclusions about a person's social communication should be based on the outcomes of different types of methods measuring different aspects of social communication. It is clear that the interrelatedness of different social communication skills needs further research. What is already known on this subject For successful communication, the ability to infer others' emotions, intentions and mental states is crucial. Autistic people have difficulty with many aspects of social communication. However, the associations between different aspects of social communication need to be better understood. What this paper adds to existing knowledge The unique contribution of this study is to compare the performance of autistic people not only with that of a control group but also with people with childhood autistic traits. This provides an understanding of the interrelatedness of different social communication skills in people with varying degrees of autistic traits. This study used four assessment methods focusing on three different social communication elements (non-linguistic comprehension, social inference and empathizing skills). These elements have complex relationships to one another, some being closely overlapping, some more distally related and some reflect more complex multifactorial elements. This study shows that although groups differ from each other in most of the assessments, the performance of different groups overlapped showing that many autistic young adults can perform well in non-linguistic and social inference tasks in structured assessment contexts. What are the potential or actual clinical implications of this work? Our findings suggest that in the assessment of social communication, self-reports and clinical assessments can be used effectively together. They can complement each other, pointing out the strengths and weaknesses of a person, leading to more personalized therapeutic interventions.

Somatic symptoms are the most common cause of outpatient medical visits in the general population, yet their presence and severity in individuals on the autism spectrum has rarely been studied. We sought to assess the prevalence, impact, and clinical correlates of 14 commonly reported somatic symptoms in a sample of 290 transition-aged autistic young adults (mean [SD] age: 23.10 [2.38] years, range 18-26; 76.7% diagnosed with autism before age 18) recruited from the Simons Foundation SPARK participant pool. A modified version of the Patient Health Questionnaire-15 was used to assess somatic symptom prevalence/impact, along with measures of depression, anxiety, autistic traits, and quality of life. Somatic symptom burden was much higher in autistic young adults than previously reported in the general population. The most commonly reported current symptoms were fatigue (72.8%), sleep problems (69.0%), and menstrual problems (61.4% of females). Moderate or severe symptom levels were reported by 53.9% of females and 18.75% of males in our cohort, with the odds of females endorsing any given symptom being 2-4 times greater than males. Both individual symptoms and total symptom burden were related to higher levels of depression, anxiety, and autistic traits, along with lower quality of life. Despite little research on this topic previously, somatic symptoms are highly prevalent in autistic young adults, particularly women. Future research is needed to investigate links between somatic symptoms, medical and psychiatric morbidity, and health care utilization in the autistic population. LAY SUMMARY: Somatic symptoms (i.e., physical symptoms such as such as pain, weakness, stomachache, or shortness of breath) are highly prevalent in the general population and account for a large proportion of health care costs. However, few studies have investigated how often these symptoms are reported by autistic adults or their associations with other clinical and demographic variables. Based on self-report data from 290 young autistic adults, we found very high rates of bothersome somatic symptoms in this population, with females endorsing all symptoms at substantially higher rates than males. Somatic symptoms were also associated with worse mental health and quality of life, suggesting that they represent an overlooked contributor to poor health outcomes in the autistic adult population.

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.

Self-reported memory of autistic young adults and associated real-world outcomes

This study investigated differences in independent living skills and executive functioning skills between autistic and neurotypical young adults in addition to how executive functioning skills contribute to independent living skills in autistic young adults. Participants completed the Adaptive Behavior Assessment System as a measure of independent living skills and the Behavioral Rating Inventory of Executive Function Adult version to measure executive functioning abilities. The Weekly Calendar Planning Activity was also used as a novel measure of performance-based executive functioning skills. Results demonstrated that independent living skills and executive functioning skills were significantly lower in autistic adults (p<.001) than neurotypical young adults. The WCPA also indicated deficits in the autistic population as demonstrated by following fewer rules, utilizing fewer strategies, lower accuracy, and lower self-awareness of performance. Within autistic adults, self-reported measures of executive functioning skills robustly correlated with independent living skills. While the Weekly Calendar Planning Activity accuracy correlated strongly with self-reported measures of executive function, the accuracy did not significantly correlate with the ABAS-3 scores suggesting a discrepancy between self-report and performance-based measures of executive functioning skills. Results indicated that the Weekly Calendar Planning Activity shows promise to inform clinical practice by providing a window into how the integration of multiple executive functioning skills impact challenges with everyday living in the adult autistic population.

BackgroundAutistic people are at increased risk of developing mental health problems. To reduce the negative impact of living with autism in a non-autistic world, efforts to improve take-up and access to care, and support in early years, which will typically start with a GP appointment, must be grounded in the accounts of autistic young adults.AimTo explore how autistic young adults understand and manage mental health problems; and to consider help seeking as a focus.Design and settingA cross-sectional, qualitative study. Autistic participants were purposively selected to represent a range of mental health conditions including anxiety and depression. A subsample were recruited from a population cohort screened for autism in childhood. The study concerns access to primary care.MethodNineteen autistic young adults without learning disabilities, aged 23 or 24 years, were recruited. In-depth, semi-structured interviews explored how they understood and managed mental health problems. Data were analysed thematically.ResultsYoung adults preferred self-management strategies. Multiple factors contributed to a focus on self-management, including: beliefs about the aetiology of mental health difficulties and increased vulnerability with the context of a diagnosis of autism, knowledge of self-management, and a view that formal support was unavailable or inadequate. Families had limited awareness of professional support.ConclusionYoung autistic adults without learning disabilities, and their families, may hold erroneous beliefs about autism and mental health. This may affect help seeking and contribute to an exacerbation of symptoms. GPs need to be alert to the fact that autistic young adults in their care may be experiencing mental health difficulties but may not recognise them as such.

This video-based study examines the pragmatic non-verbal comprehension skills and corresponding neural-level findings in young Finnish autistic adults, and controls. Items from the Assessment Battery of Communication (ABaCo) were chosen to evaluate the comprehension of non-verbal communication. Inter-subject correlation (ISC) analysis of the functional magnetic resonance imaging data was used to reveal the synchrony of brain activation across participants during the viewing of pragmatically complex scenes of ABaCo videos. The results showed a significant difference between the ISC maps of the autistic and control groups in tasks involving the comprehension of non-verbal communication, thereby revealing several brain regions where correlation of brain activity was greater within the control group. The results suggest a possible weaker modulation of brain states in response to the pragmatic non-verbal communicative situations in autistic participants. Although there was no difference between the groups in behavioural responses to ABaCo items, there was more variability in the accuracy of the responses in the autistic group. Furthermore, mean answering and reaction times correlated with the severity of autistic traits. The results indicate that even if young autistic adults may have learned to use compensatory resources in their communicative-pragmatic comprehension, pragmatic processing in naturalistic situations still requires additional effort.

Autistic adults consistently report difficulties understanding speech in adverse listening environments, which may be related to differences in social communication and participation. Research examining masked-speech recognition in autistic adults is limited, particularly in competing speech backgrounds with high degrees of informational masking. This work characterizes speech-in-speech and speech-in-noise recognition in young adults on the autism spectrum, as well as evaluates self-reported functional listening abilities and listening-related fatigue. Masked-speech recognition was evaluated in both autistic (n = 20) and non-autistic (n = 20) young adults with normal hearing. Speech reception thresholds were adaptively measured in two-talker speech and speech-shaped noise using target sentences that were either semantically meaningful or anomalous. Functional listening abilities and listening-related fatigue were assessed using the Speech, Spatial, and Qualities of Hearing Scale and the Vanderbilt Fatigue Scale for Adults. Autism characteristics and social communication experiences were quantified using the Social Responsiveness Scale-Second Edition. Autistic adults displayed significantly poorer speech-in-speech recognition than their non-autistic peers, while speech-in-noise recognition did not differ between groups. Functional listening difficulties in daily life and listening-related fatigue were significantly higher for autistic participants. Autism characteristics strongly predicted functional listening abilities and listening-related fatigue in both groups. Autistic young adults experience objective speech-in-speech recognition difficulties that correspond with listening challenges in daily life. Autism characteristics and social communication experiences predict functional listening abilities reported by both autistic and non-autistic young adults with normal hearing. Speech-in-speech recognition difficulties observed here may amplify social communication challenges for adults on the autism spectrum. Future work must prioritize improved awareness of autistic listening differences.

BackgroundAutism is characterized by social difficulties, yet many autistic people value and desire social relationships. Given the limited research on autism in adulthood, particularly among those with lower cognitive ability, this study aimed 1) to compare self- vs informant-report of social relationships (acquaintances, friendships, and interpersonal difficulties) and 2) to compare social relationships, between more cognitively able (MCA) and less cognitively able (LCA) autistic young adults. MethodParticipants included 101 autistic young adults (Mage=25.90; SD=1.41; 82.0 % male; 79.8 % White) and their informants. Participants were interviewed, and the Interpersonal Difficulties and Social Relationships sections of the Social and Emotional Functioning Interview (SEF) were analyzed. Participants were classified as MCA (IQ≥70) or LCA (IQ<70). ResultsFor the MCA sample, informant and self-report SEF scores were all positively correlated and did not have significantly different median values. Weaker and non-significant associations emerged for social contexts outside of the home (e.g., at work) and more abstract concepts (e.g., quality of relationships). Although cognitive ability impacted the extreme SEF scores (e.g., having self-initiated reciprocal friendships), many social difficulties were shared by LCA and MCA young adults, according to informant reports. ConclusionsThis study is one of few on social relationships and autism to focus on adulthood and include LCA young adults. Results indicate that informant-report provides useful information on more concrete aspects of social relationships in this population. Many autistic young adults, and LCA young adults in particular, may benefit from additional social supports, yet it is also essential to collaboratively consider what types of social experiences and relationships are desired and feasible for each person. More research and intervention tailored to LCA autistic young adults are needed.

Why was this study done?: This study piloted a measurement strategy for deciding what to measure and support in real-world contexts of independent living and on-campus experiences in a 3-week residential program for young autistic adults.What was the purpose of this study?: The study aimed to measure and support autistic adults' quality of life (QoL) learning in terms of the extent to which pursuing self-set wellness goals, with supports, positively impacted autistic adults' active engagement (e.g., participation in wellness activities), and expressed interest (e.g., willingness to participate).Why was this program developed?: The program was developed because more young adults on the spectrum are aging into adulthood without personalized, respectful, and meaningful supports to promote engaged adult living. We wanted to build on our experience and feedback from autistic adults, family, and partners who have engaged in weekly social engagement groups on a university campus and called for more comprehensive transition programs.What did the program do?: The project was a pilot of an on-campus program aimed at facilitating personally meaningful improvements in QoL through empowering autistic adults to act on their personal motivations, interests, and goals. It also emphasized learning through experiences in real-life contexts, in collaboration with other participants, campus resources, community members, and program staff.How did the researchers evaluate the new program?: The program team used both quantitative and qualitative methods. Quantitative methods included standard self-report tools that autistic adults used to rate their safety needs, adult self-direction skills, autism-related self-concept, priority of self-set wellness goals, and confidence in abilities to achieve and learn more about one's own wellness goals. Predetermined qualitative methods included analysis of themes from participants' narrative data from their wellness interviews with participants and open-response items from self-report tools. The program was also responsive through a preprogram wellness interview with parents, staff's field notes about of participants' behaviors, conversational interactions with participants, and team discussions. Researchers contextualized and synthesized the data into narrative case studies about each participant's wellness journey.What were the early findings and what do they add to what was already known?: Results showed that the program was able to facilitate participants' QoL learning in personal wellness goals in collaboration with campus and community resources. Participants expressed meaningful changes in their expressed interests, active engagement, and self-concept through participating in this brief residential on-campus program.What are potential weaknesses of this pilot?: Weaknesses included a short time period of 3 weeks, a small participant count of 5, and the resource-intense supports needed for the program.What are the next steps?: The next steps are to adjust the program based on participant feedback and pursue creation of a multiyear program to continue piloting the measurement and support strategies for facilitating autistic adults' active wellness engagement and self-determined independent living.How will these findings and this work help autistic adults now or in the future?: This work informs future wellness interventions for measuring and supporting autistic adults' efforts to self-determine meaningful changes to their QoL.