Autism in adulthood : challenges and management最新文献

Background: There are a few ecologically valid measurements of Daily Living Skills (DLS)-a critical component of adaptive functioning (AF)-for autistic adolescents and young adults. This is particularly important given that DLS predict outcomes as autistic adolescents transition to adulthood.

Methods: We pilot-tested the assessment section of two modules of the Computerized Functional Skills Assessment and Training program (CFSAT) in 25 autistic (n = 4 female) and 25 non-autistic (n = 6 female) adolescents and young adults to evaluate preliminary feasibility in an autistic sample. Tasks involved using an ATM and ticket-buying machine. We also assessed AF and DLS with a well-validated self-report questionnaire. We examined group differences in performance and relationships between performance on CFSAT and an existing measure of AF and DLS. We also conducted regression analyses to investigate the associations between age, IQ, executive functioning (EF), and CFSAT task performance.

Results: All but one autistic participant were able to complete the CFSAT tasks. Autistic participants made more errors, but did not take longer to complete the task, than non-autistic participants. Performance correlated strongly with self-reported AF generally and DLS specifically. The regression analyses revealed that task performance was associated with EF in the autistic group, but not the non-autistic group.

Conclusions: These results provide preliminary support for the use of a new performance-based ecologically valid assessment of DLS in an autistic population. Two CFSAT modules were well-tolerated and detected differences in DLS ability. Strong correlations with an existing measure of AF suggest evidence of construct validity. The EF was associated with CFSAT task performance in autistic individuals. Such a tool could help identify individuals who would benefit from a DLS intervention.

Background: Fictional portrayals of autism play a role in raising awareness, shaping knowledge, and influencing attitudes toward autism. However, the accuracy of these portrayals is a topic of debate. Limited research has been conducted with the autism community regarding their perceptions of fictional portrayals of autism. This study aimed to explore autistic people's perceptions of the accuracy, educational benefits, and impact of Atypical, a Netflix comedy drama series focused on the experiences of an autistic protagonist.

Methods: Participants were 77 members of the autism community (autistic N = 65, parent/partner N = 12), recruited via social media. Participants completed a cross-sectional predominantly qualitative survey. We undertook descriptive statistical analyses on the quantitative data and used a reflexive thematic analysis approach to analyze the qualitative data.

Results: The majority of participants described Sam's portrayal as accurate, emphasizing that it was accurate as one example of autism. Family members appeared more likely to perceive Atypical as having informative benefit and being likely to improve attitudes toward autism than were autistic people. The primary concerns identified were the stereotypical representation of a popular media image of autism, the lack of diversity, and the depiction of autism as a burden or challenge for the protagonist and his family.

Conclusions: This study builds on previous research on the portrayal of autism in entertainment media by investigating the perception of the autism community regarding one such fictional portrayal. It identifies that for entertainment media to better represent the lived experience of autistic people and improve community understanding of autism, there is a need for increased diversity of portrayals and for the involvement of autistic people in the development and production process.

Current tools for identifying autism are critiqued for their lack of specificity and sensitivity, especially in autistic people who are older, have higher verbal ability or significant compensatory skills, and are not cisgender boys. This may reflect the following: the historical focus of autism research on White (cisgender) male, upper and middle class children; limited interest in the inner, lived experience of autism; and the predominance of a deficit-based model of autism. We report here on the first attempt of which we are aware to develop a clinical self-report measure of autistic traits as described by autistic people. We believe this is an advance in methodology because prior work in the development of autistic trait/diagnostic measures has prioritized the perspectives of nonautistic clinicians and scientists. The measure was developed under the leadership of two autistic researchers and constructed by leveraging descriptions of autism by autistic people to generate items designed to encompass the range of the autistic experience, using strength-based, accessible language. The team utilized iterative feedback from a panel of autistic experts to refine and enhance the measure, called the Self Assessment of Autistic Traits (SAAT). It is intended for people 16 years or older and uses a format that is designed to increase its accessibility and acceptability for autistic respondents. Future work will report on the preliminary psychometrics of the SAAT, with a long-term goal of advancing our understanding of the inner autistic experience and enhancing the clinical and scientific assessment of autism.

Background: Autistic adults have high rates of co-occurring health conditions, suicide, and premature mortality, yet often experience health care barriers and poor health outcomes. A better understanding of the health care needs and experiences of autistic adults is essential for improving the health care system and patient experience.

Methods: This study examined the perspectives of autistic adults regarding their health care experiences in primary care and other settings and their suggestions for improvement using both qualitative and quantitative methods. Twenty autistic adults (aged 18-35 years, 65% male) completed surveys and individual semi-structured interviews.

Results: Qualitative data analysis results revealed 10 subthemes across 3 overarching themes: (1) system- and clinic-level factors affect access to care, (2) aspects of the clinic environment affect health care experiences, and (3) provider knowledge and practices affect health care experiences. Within the first theme, participants described barriers to obtaining services, including scheduling logistics, costs and inadequate insurance coverage, and transportation barriers. The second theme focused on aspects of the clinic environment that participants found especially relevant to their health care experiences and that required specific accommodations. This included sensory input, anxiety-provoking situations and procedures, and wait time. Within the third theme, participants emphasized aspects of providers' care that affected their health care experiences. Key factors included provider knowledge about autism, communication, rapport, and individualized care and patient-provider partnerships.

Conclusion: Overall, the findings point to a need for provider training and improvements to the health care delivery system to better meet the unique needs of autistic adults.

Background: A review of existing tools suggested a need for a goal setting tool for autistic people that (1) addresses the heterogeneity of autistic people to the greatest degree possible; (2) addresses a broad range of goals in areas including self-care and home living, and social, community, educational, and employment participation; (3) incorporates autism-specific adaptations such as visual supports; (4) facilitates the initial identification of goals; and (5) enables the prioritization of goals.

Aim: This project aimed to develop a picture-based card-sort goal setting tool with relevant and comprehensible goal cards using a co-design and co-production process.

Methods: The first three of four phases of participatory action research (PAR) used to develop the tool are presented, including (1) initial design by autistic people and professional practitioners, and co-production with an autistic graphic designer; (2) survey of 15 autistic people and 11 family members to evaluate and refine the goals, pictures, and wording; (3) second survey of 23 autistic people and 19 family members to re-evaluate and re-refine the goals, pictures, and wording.

Results: Responses to open-ended survey questions recommended changing many of the pictures and some of the words on the goal cards. As the majority of respondents rated each of the 72 goals as important, they were all retained. The mean percentage approval of the pictures improved from 78% for survey 1 to 86% for survey 2. The mean percentage approval of the wording improved from 87% for survey 1 to 97% for survey 2.

Conclusions: The use of a co-design and co-production methodology over three phases of PAR involving autistic people and their families resulted in many refinements to the goal cards. These iterations in the design process maximized the extent to which the goal cards are easily understood and relevant to the needs of autistic people.

Background: Racial/ethnic disparities in access to diagnostic services are pervasive for autistic children. However, a few studies have examined racial/ethnic health disparities among autistic adults, who commonly experience higher rates of health conditions than non-autistic adults. We aimed at examining the intersection of autism and race/ethnicity in association with psychiatric and medical diagnoses.

Methods: The study population included adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. We ascertained 1507 adults who had an autism diagnosis documented in their electronic medical records. We sampled a matched control group of adults without an autism diagnosis (N = 15,070) at a 10:1 ratio. Our sample was 46% White, 17% Hispanic, 16% Asian, 7% Black, and 14% other race/ethnicity. We compared health diagnoses (a) between autistic and non-autistic adults within strata of race/ethnicity and (b) across race/ethnicity within strata of autistic and non-autistic adults. Lastly, we examined the interaction between autism and race/ethnicity on both multiplicative and additive scales.

Results: Autistic adults were more likely to be diagnosed with most medical and psychiatric conditions compared with their non-autistic counterparts of the same race/ethnicity. Among autistic adults, Black, Hispanic, and Asian adults were less likely to be diagnosed with psychiatric conditions and Black and Hispanic autistic adults were more likely to be diagnosed with obesity than their White counterparts. In interaction models, we found that adults who were Black and autistic were disproportionately less likely to be diagnosed with psychiatric conditions and autoimmune disease and more likely to be diagnosed with hypertension than expected.

Conclusion: Health vulnerabilities may be compounded at the intersection of autism and race/ethnicity. Future research should continue to apply an intersectional lens toward understanding and addressing these disparities. Our findings likely underestimate the health disparities that exist in uninsured autistic adults and those living in other parts of the United States.

Background: African American/Black (AA/B) young adults with diagnoses of autism spectrum disorders rarely are studied in a way that acknowledges both their racial identity and their autism diagnosis. Little is known about intersectional oppression in the lives of these young adults. Early adulthood is a time when a young people of color may come to terms with a society that may not treat them fairly and equally due to their race. Autistic AA/B young adults may be even more vulnerable to stress and psychological disempowerment due to the added impact of negative experiences of being Black and having an autism diagnosis.

Methods: Thirty-two autistic and 30 non-autistic AA/B young adults took part in an online survey examining risk factors of everyday discrimination, perceived stress and potential protective factors of psychological empowerment, and Black identity. Differences in score measures for the autistic and non-autistic samples were examined along with the predictors of perceived stress assessed. Frequencies of intersectional discrimination experiences were also examined.

Results: Autistic AA/B participants reported significantly less everyday discriminatory experiences than non-autistic AA/B participants, whereas perceived stress was not significantly different between the two groups. The majority of non-autistic AA/B participants endorsed race as their prime source of experiences of discrimination, whereas autistic AA/B participants also cited being autistic as a major contributor to reports of discrimination. Although the autistic group had significantly lower reports of self-determination, they reported higher on the Black identity, private regard scale, pertaining to feelings about group membership, which can be considered a protective factor. There is heterogeneity in reasons for discriminatory experiences for autistic AA/B young adults whereby some of the participants (12%-30%) endorsed race + disability as dual reasons for experiencing regular discrimination.

Conclusions: Mental health clinicians and other direct service providers working with autistic AA/B young adults should understand that intersecting identities of race and disability may be at play when they are working with these individuals, and that treatment should consider these factors.