Autism in adulthood : challenges and management最新文献

Background: Little is known about autistic parenthood. The literature that exists suggests that autistic parents can find it difficult to manage the everyday demands of parenting and domestic life. While emerging research has also highlighted more positive parenting experiences, greater understanding of autistic parenthood is needed.

Objective: This study sought to understand autistic parents' parenting experiences during the initial phase of the COVID-19 pandemic.

Methods: Thirty-five Australian autistic parents (95% women) of autistic children (aged 4-25 years) took part in semi-structured interviews designed to elicit their experiences of life during lockdown. We used reflexive thematic analysis using an inductive (bottom-up) approach to identify patterned meanings within the data set.

Results: Autistic parents repeatedly spoke of how the lockdown brought some initial relief from the intensity of their usual lives caring for their children. Nevertheless, most autistic parents felt that the "cumulative stress" of trying to juggle everything during lockdown proved very challenging, which eventually took its toll on parents' mental health. Parents were aware that they needed support but found it difficult to reach out to their usual social supports (including autistic friends) for help, and formal supports were virtually nonexistent. Consequently, they felt "very much forgotten." Nevertheless, they described how their connections with their children grew stronger over lockdown as they focused on nurturing their children's "mental health ahead of everything else."

Conclusions: Our analysis shows how challenging conventional life can be for autistic parents. Parenting requires grappling with a distinctive set of demands, which are usually partially manageable through the informal supports many autistic parents draw upon. The relative absence of informal supports during the pandemic, however, left them reliant on more formal supports, which were not forthcoming. Research is urgently needed to identify the most effective formal supports for autistic parents, ideally in partnership with autistic parents themselves.

Background: The autistic community have called for an increase in autism research exploring the lifespan experiences of autistic people. Researchers have notably neglected the parenting experiences of autistic adults. We aimed to study the factors that impact the mental health of autistic parents. We also explored the possible influence of childhood trauma.

Methods: Nine autistic parents took part in remote semi-structured interviews. We used participants' chosen communication modalities during interviews to facilitate accessibility. We carried out data analysis using the principles of Iterative Phenomenological Analysis, a qualitative approach where meaning is co-constructed by both the participant's interpretation of their personal experience and the researcher's subjective interpretation.

Results: We identified three superordinate themes: Identity and Purpose; Looking Through a Lens of Trauma; and External Factors. Our participants described intimate connections with their children, who were sources of love and joy. Their childhood trauma influenced their parenting experiences. They experienced extreme empathy, perfectionism, and a drive to protect their children from the same trauma. We found that professionals' acceptance and awareness of autism was essential for positive outcomes during interactions with participants. Participants also experienced pervasive sensory overload from their environments, related to a loss of trusted coping mechanisms when they became parents.

Conclusions: Our study draws attention to the influence of childhood trauma on the parenting experience of autistic adults. We reveal an unexplored long-term impact of childhood trauma resulting from a lack of support and othering of autistic children. Professionals should consider that autistic parents may be parenting through a lens of historical trauma. Professionals should be trained in trauma-informed approaches for providing support. Researchers should investigate this phenomenon to explore how this knowledge can be used to inform practise. Researchers should also investigate wider systemic and societal issues that have an impact on the mental health of autistic parents.

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.

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.