When expectation meets experience: A qualitative analysis of serial interviews with adults before and after autism assessment.

Assessment and diagnosis of autism in adulthood is a growing area of interest for both clinical and research practice. In this commentary, we present a thematic analysis following the first International Society for Autism Research Special Interest Group (SIG) focused on assessment and diagnosis of autism in adulthood. An increasing recognition of missed or misdiagnosed autistic adults is highlighted throughout the commentary. Recommendations for reducing barriers in diagnostic processes are reviewed, including improving existing adult autism measures and developing new ones, especially self-report/interview tools capturing what cannot be externally observed; providing more information about the process ahead of time and better post-diagnostic support; better assessment of psychosocial and mental health histories; training to promote clinicians' understanding of adult autism; and the importance of considering culture. Professional and government bodies should support the development of neuroaffirming, client-centered practice guidelines that actively include input and co-design from autistic adults.

Accessing adult autism diagnostic pathways can be difficult. This study explored perspectives of UK autistic adults, relatives and clinicians regarding the characteristics of optimal adult autism assessment and diagnostic services. In stage 1, three key stakeholder groups were surveyed about experiences of adult autism diagnostic services (pre-assessment/assessment): 343 autistic adults, 45 relatives and 35 clinicians completed parallel surveys. Information from stage 1 surveys was used to devise statements for a modified Delphi process in stage 2 seeking consensus among clinicians on optimal diagnostic service characteristics. Data analyses were non-parametric and descriptive. Over half of adults were in contact with mental health services prior to autism diagnosis. Clinicians reported that multidisciplinary diagnostic teams lacked key professionals. Thirteen statements describing optimal autism diagnostic service provision were developed. There was consensus from clinicians on 11 statements relating to clear assessment pathways, updates for people while waiting, pre-assessment information gathering/provision, co-occurring condition identification and training/networking. Some autistic adults, relatives and clinicians were positive about services, all stakeholders identified improvements were needed. The findings describing optimal service provision are relevant for UK clinicians, managers and commissioners to improve diagnostic assessments for autistic adults, and have international relevance for similar health systems.Lay abstractLiving with undiagnosed autism can be distressing and may affect mental health. A diagnosis of autism can help self-awareness and self-understanding. However, it can be difficult for adults to access an autism assessment. Clinicians also sometimes find it hard to identify autism in adults. This may mean an autism diagnosis is delayed or missed. In this study, we asked autistic adults, relatives and clinicians how to improve this. The study was in two stages. In the first stage (stage 1), 343 autistic adults and 45 relatives completed a survey. In the survey, we asked questions about people’s experiences of UK autism assessment services for adults. Thirty-five clinicians completed a similar survey. Clinicians reported that some autism assessment teams lacked key professionals, for example, psychologists and occupational therapists. We used the information from the three separate surveys to create 13 statements describing best autism assessment services for adults. In stage 2, we asked clinicians for their views on the 13 statements. Clinicians agreed with 11 of the statements. Some autistic adults, relatives and clinicians were positive about autism assessment services, and many also described areas that could be improved. The study findings can be used to improve UK adult autism assessment services and may be helpful for service developments worldwide.

Awareness and diagnosis of autism in adulthood is on the rise. Studies have considered the impact of receiving an autism diagnosis for parents of children on the spectrum, although only few primarily qualitative studies have considered the self-reported impact of autism diagnosis. The Impact of Diagnosis Scale (IODS) was initially developed with a focus on borderline personality disorder. Our aim was to develop a version suitable for autistic individuals. The research team and a group of autistic advisors revised the IODS items for suitability and accessibility to autistic participants. We gathered participant data for 92 autistic adolescents and adults from the Cooperative Research Centre for Living with Autism (Autism CRC) Study of Australian School Leavers with Autism (SASLA) and the Australian Longitudinal Study of Autism in Adulthood (ALSAA). We used iterated principal factors analysis to explore potential factors, and thematic analysis to explore responses to two open-ended items. Factor analysis suggested three factors of "Service Access (SA)," "Being Understood (BU)," and "Self-Acceptance and Understanding (SU)" for the 12 items of the IODS-Preliminary Revision (IODS-PR). Cronbach's alpha was good overall and acceptable for subdomains. Item mean scores suggest that although impact of autism diagnosis was generally perceived as positive for SU, scores were neutral in other domains. Qualitative analysis identified themes of Self-Understanding, Identity, and Acceptance, Supports and Services, Valence of Response, Relationships, and Camouflaging. The IODS-PR is the first scale to measure the self-reported experience of receiving an autism diagnosis. It showed good psychometrics and provides new insight into the experience of autism diagnosis. Qualitative analysis identified domains that remain unexplored and the potential for an expanded item set. A further revision of the tool will soon be available. It will provide critical information for clinicians and has potential applications for research and service evaluation. Why was this study done?: There are increasing numbers of adults who are only diagnosed with autism in their teen and adult years. Research on this topic is limited, with most using surveys or interviews.What was the purpose of this study?: The purpose was to develop a revision of the Impact of Diagnosis Scale (IODS) to make it suitable to autistic teenagers and adults.What did the researchers do?: We worked with autistic research advisors to create the IODS-Preliminary Revision (IODS-PR), which has 12 items scored on a 7-point agree/disagree scale and two open-ended questions. We then gathered data using the IODS-PR from the Study of Australian School Leavers with Autism (SASLA) and the Australian Longitudinal Study of Autism in Adulthood (ALSAA). We ran a factor analysis on the scores and conducted a thematic analysis of the open-ended responses. One of the autistic advisors reviewed how we interpreted our results.What were the results of the study?: There were 92 autistic participants (46 males, 38 females, 8 nonbinary; mean age of 36 years old). On average, participants were diagnosed with autism at age 30. The factor analysis suggested three domains in the IOD-PR: Self-Acceptance and Understanding, Being Understood, and Service Access. On average, participants' scores suggested receiving an autism diagnosis was helpful for understanding and accepting themselves, but neutral for being understood by others or getting support from services.The thematic analysis identified several themes, the strongest theme was Self-Understanding, Identity, and Acceptance, where participants mostly commented on the positive new self-identity that came from their autism diagnosis. There was a Supports and Services theme that was divided into Enabled Support, Support not needed, and No or poor services. Most concerning was that many participants commented that the autism diagnosis did not enable any access to supports or that there were no appropriate supports available. There was a Valence of Response theme that was divided into Relief, Positive impact, Wish diagnosed earlier, and Negative impact. There was a Relationships theme divided into Connected with autistic community, Improves relationships, and Others lack understanding. Finally, there was a Camouflaging theme.Based on these results, the researchers are working on further revisions to the IODS-PR to make it more useful and accessible.What do these findings add to what was already known?: The adapted IODS shows promise and findings will guide further development of the tool. These early-stage findings agree with what previous research said about the impact of receiving a diagnosis of autism in adulthood.What are potential weaknesses in the study?: There are strengths and weaknesses to using a questionnaire tool to research this topic. Interview research can get a more in-depth understanding of an individual's response to the diagnosis.How will these findings help autistic adults now or in the future?: When the revised IODS is available, it could be used to evaluate support services and help clinicians understand how to help create a more positive response to diagnosis. Our findings confirm more needs to be performed about postdiagnosis supports.

Community participation of autistic adults is important for health and well-being. Many clinical efforts and interventions aim to enhance community participation in this population. To empirically examine the relationship between community participation and community mobility. A randomized controlled trial using data from baseline and 4- to 6-wk follow-up. Community organizations serving autistic adults in Philadelphia. Sixty-three autistic young adults with data on community mobility and participation from a prior study on public transportation use. Participants were tracked with GPS-enabled cell phones over a 2-wk period. A spatiotemporal data mining algorithm was used to compute the total number of destinations, nonhome destinations, unique destinations, percentage of time spent outside the home, and median daily activity space area from the GPS data. The Temple University Community Participation measure was used to collect self-report data in 21 different areas, and total amount, breadth, and sufficiency of participation were calculated. Moderate and statistically significant associations were found between community mobility and participation variables at baseline and follow-up. However, changes in community mobility were not related to changes in community participation. Health policymakers and providers should consider community mobility as a factor that can affect community participation in autistic individuals. Plain-Language Summary: Lower levels of community participation among autistic young adults affect health outcomes and overall quality of life. Community mobility is often a barrier to community participation. An understanding of the relationship between community mobility and community participation can lead to occupational therapists tailoring specific interventions and policies that support autistic young adults to engage in important life activities within the community.

Emerging research suggests that seeking an autism diagnosis as an adult is usually difficult and time-consuming but brings relief once a diagnosis is made. This study explored the experience of the pathway to an autism diagnosis during adulthood for adults living in Australia. We conducted a qualitative phenomenological study and interviewed 13 adults who identified as autistic about their pathway to autism diagnosis in their mode of choice. Spoken interviews were transcribed verbatim, and transcripts were analyzed by using a thematic approach. Data analysis resulted in 6 themes and 20 meaning units that described the experiences of adults seeking an autism diagnosis in Australia. These themes involved two interwoven journeys that spanned before, during, and after the diagnostic process. The personal journey involved feeling different, considering autism, and living as autistic, whereas the clinical journey involved missed opportunities, varied diagnostic experiences, and absent supports. Given the potential benefits for adults obtaining a formal autism diagnosis and accessing post-diagnostic supports, it is important that health professionals and governments collaborate to reduce access barriers and ensure adequate services are available. The findings from this study informed the development of Australia's national guideline for autism diagnosis.

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.

“It feels like holding back something you need to say”: Autistic and Non-Autistic Adults accounts of sensory experiences and stimming

Most autism research has been conducted in Western settings, which means that we know little about the lived experiences of autistic adults across a wide range of sociocultural contexts and countries. This study is, to our knowledge, the first to examine the lived experiences of autistic Japanese adults, eliciting their experiences of growing up autistic from their time at elementary school to the time of interview. We used semi-structured interviews with seven autistic Japanese adults, who had been clinically diagnosed in their 20s and 30s. Using reflexive thematic analysis, we identified four themes, including (1) people feeling different and misunderstood, (2) the books, doctors or other autistic people enabling the journey towards diagnosis, (3) the many and mixed emotions that emanated from the diagnosis and (4) a strong desire to be accepted. All interviewees experienced significant hardship throughout their lives, including a lack of acceptance of their diagnosis from their families. While this took its toll on the interviewees’ mental health, they desired to be understood by others and to address stigma. More efforts are needed to increase the knowledge, understanding and acceptance of autism in Japan through the lens of neurodiversity and with the input of the autistic community.Lay We know more and more about what it’s like to be autistic and autistic people’s experiences at school and at work. But most studies are from Western cultures, especially the United Kingdom and the United States, which means we know little about what it’s like to be autistic in other cultures, including East Asian cultures. In this study, for the first time, we investigated the life experiences from school to employment of Japanese autistic adults. We asked seven Japanese autistic adults, who had received their clinical diagnosis in their 20s and 30s, about their experiences from their own perspective. We found four major ideas or ‘themes’: (1) people feeling different and misunderstood, (2) the books, doctors or other autistic people enabling the journey towards diagnosis, (3) the many, mixed emotions that came from getting an autism diagnosis and (4) a strong desire to be accepted. All participants experienced bullying and felt different from others around them from an early age. Some participants were happy to receive their autism diagnosis, which made them understand themselves better, while others had mixed feelings – such as feeling hopeless because autism has no cure. Our findings are consistent with previous Western research. We also found some distinctive experiences from Japanese participants, who faced a significant amount of stigma, potentially because of negative attitudes towards autism/disability and Japanese social expectations and rules. Future research should focus on the needs of autistic people in Japan and work with them to increase understanding, awareness and acceptance of autism.

Many clinicians in New Zealand do not follow guidelines for best practice in autism diagnosis. In this study, we investigated the processes that health professionals in New Zealand follow when diagnosing autistic children and adults. We asked 117 health professionals from a range of services and regions in New Zealand, how they identify and diagnose autism. We found that there are differences in the way that clinicians in New Zealand diagnose autism. We identified areas in which autism diagnosis in New Zealand could be improved, for example, by establishing more services to diagnose autism in adolescents and adults, and providing more consistent support after a person is diagnosed with autism. These findings will help to improve autism diagnosis in New Zealand.

Accessing an autism diagnosis is a key milestone, both for an individual and their family. Using a qualitative methodology, the current study examined the views and experiences of ten autistic adults, ten parents of children on the autism spectrum, and ten professionals involved in autism diagnosis, all based in the United Kingdom (UK). Interviewing these 30 respondents about the diagnostic process and subsequent support options, the goal was to identify aspects of the diagnostic process that are working well, and areas in which improvements are needed. Using thematic analysis, three key themes were identified: the process of understanding and accepting autism; multiple barriers to satisfaction with the diagnostic process; and inadequate post-diagnostic support provision.

Insistence on sameness is common in autistic individuals and continues into adulthood. Research shows it may be a way to cope with environments because of their sensory sensitivity, intolerance to uncertainty, and anxiety. Understanding the reasons for insistence on sameness from the perspective of autistic adults is important. To study the meanings of insistence on sameness for autistic adults, we interviewed 16 Brazilian autistic adults. All 10 formally diagnosed participants were diagnosed in adulthood. Six participants identified as being on the autism spectrum without formal diagnosis. During the interviews by email, we first asked about participants' experiences with autism diagnosis, either formal diagnosis or self-diagnosis. Then, we asked about their experiences in places for eating out and grocery shopping. We found they tended to always go to the same places and use protective accessories to eat or shop comfortably. But their such behaviors were considered weird habits, first by other people and later by themselves. While trying to control their weird habits because of social pressure, they often suffered anxiety and meltdowns. When they finally learned of their autism in adulthood, they began to better understand who they are and why they experience the environment differently from others. This new understanding taught them that their so-called weird habits are actually part of their authentically autistic ways to cope with the weirder world. This study suggests that autistic adults' insistence on sameness is an authentically autistic way to exercise their right to comfortably co-exist and live as human beings and as themselves.

Autistic adults are more likely to be unemployed compared to neurotypical adults and those with disability. To address these poorer employment outcomes, it is important to consider factors that may be impacting on autistic adults' employment outcomes. Anxiety is a common co-occurring condition for autistic adults; however, there is little research on how anxiety affects or influences autistic people's experience across the employment-seeking process. The aim of this study was to explore whether anxiety is perceived to affect autistic adults' ability to engage in employment-seeking tasks. Online, semi-structured interviews were conducted with 12 autistic adults (22-52 years) who were actively seeking employment or had sought employment in the last 18 months. Interview transcripts were analysed using thematic analysis. Three themes were generated from the data analysis. Theme 1, Finding the "sweet spot", identified some level of anxiety-but not too much-was helpful in performing the employment-seeking tasks and this "spot" could vary depending on the person and the task. Theme 2, Anxiety affects the ability to perform and function, encapsulates the autistic person's experience when anxiety is too high. The third theme, The "vicious cycle" of anxiety and employment-seeking behaviours, explores participants' ongoing experience of anxiety on their employment-seeking behaviours. The findings suggest that autistic job candidates would benefit from tailored accommodations and adjustments offered throughout the recruitment process, to reduce anxiety and improve employment-seeking outcomes for autistic candidates.

Clinicians use diagnostic interviews to help them gather and organize information collected in the assessment of autism. Most instruments are developed for children and few measures have been developed that are reliable, valid, and appropriate for use in adulthood. This is a significant barrier to providing a high-quality, timely service for adults. The aim of this development study was to assess the initial utility of the recently developed Autism Clinical Interview for Adults (ACIA) for use in autism diagnostic clinical services before further large-scale testing and evaluation. We invited adults who had received an autism spectrum diagnosis through a U.K. National Health Service (NHS) multidisciplinary adult autism assessment to participate. Seventeen autistic adults (8 women and 9 men, mean age of 37 years) and four relatives agreed to an interview. The semistructured ACIA interview comprises subject and informant versions, and a self-report preinterview questionnaire. In combination, the ACIA components cover topics relevant to autism and co-occurring condition assessment. We evaluated clinical utility and content validity via comparison with the Diagnostic and Statistical Manual Fifth Edition (DSM-5) and NHS diagnostic reports. Each interview took between 60 and 90 minutes to complete. Comparison with DSM-5 and the NHS autism diagnostic report demonstrated that the ACIA accurately identified information on core autism characteristics needed for a diagnosis, and identified co-occurring conditions. In response to participant suggestions we revised the interview. These initial findings support the potential utility and validity of the ACIA for adult autism diagnostic clinical services. Further investigations of the acceptability, utility, and validity of this interview are planned. Why was this study done?: Clinicians use diagnostic interviews during assessments to help gather and record information both from a person suspected to be on the autism spectrum and from an informant (someone who knows them well). However, most autism diagnostic interviews were originally developed for assessing autism in childhood, and few have been developed for use with adults. The lack of diagnostic interviews developed specifically for use with adults makes it difficult to provide a good-quality, consistent assessment.What was the purpose of this study?: The study tested a new semistructured diagnostic interview called the Autism Clinical Interview for Adults (ACIA). The ACIA includes a questionnaire for people to complete before their interview. This is followed by an interview that can be conducted with the person themselves and a separate version to be used with someone who knows them well (if permitted). The interview covers autism traits, strengths and difficulties, and co-occurring physical and mental health conditions. We wanted to find out if the interview is useful for autism diagnostic services by comparing information collected using the ACIA with clinical diagnostic reports.What did the researchers do?: We invited people who had received a diagnosis of autism from a U.K. National Health Service (NHS) assessment to take part in an interview. We asked them if we could also interview someone who knew them well, and if we could compare their NHS autism diagnostic report with information gathered using the ACIA.What were the results of the study?: Seventeen autistic adults (average age 37 years; 8 women and 9 men) and 4 relatives/supporters (2 parents, a spouse, and a cohabiting partner) agreed to be interviewed. Each interview took 60 to 90 minutes to complete. A comparison with clinical reports showed the ACIA identified autism traits relevant for a diagnosis, as well as co-occurring conditions (e.g., depression). Participants suggested some ways to improve the interview, and revisions were made.What do these findings add to what is already known?: There are few diagnostic interviews designed specifically for use with adults seeking a diagnosis of autism. The findings from this study show that the ACIA is a promising new interview.What are the potential weaknesses of the study?: The study is small. However, it is important to run an initial test study before involving more people and resources in larger studies. Building on these results, we aim to undertake further studies on the acceptability and usefulness of the new interview with a larger number of people, including people from a range of backgrounds.How will these findings help autistic people now or in the future?: The ACIA has potential for use in adult autism clinical assessment services and as a resource for research and training. The semistructured format helps gather important and relevant information, and the interview length supports feasibility in clinical and research settings. The ACIA has the potential to streamline autism assessments and speed up the process for adults who currently wait a long time for their diagnosis.

This thesis explores the range of discourses in which parents and professionals engage when a child is assessed and diagnosed with autism. The main focus is on the parents’ meaning-making in recognition of the investment parents have in the topic. It also takes an anti-discriminatory and emancipatory standpoint in recognition of the relative lack of voice parents are awarded in research and in the development of autism services. A team of professionals in an autism assessment centre were recruited along with parents of four families referred to them to receive an autism assessment for their child. Data were collected during routine assessment centre meetings between parents and professionals and in pre-assessment and post-diagnosis research interviews with parents. A critical discursive psychological approach was taken to analyse data. This synthetic approach, merging a macro-level and micro-level analysis, was used to explore the application of diagnostic criteria, policies and protocols as discursive resources alongside analysis of talk-in-action. The findings of the research programme produced three themes for the thesis: knowledge, power and possibilities. In relation to the first theme, parents talk and the practices of autism assessment and diagnosis, produced a distinction between expert ‘knowledge’ and parents’ ways of ‘knowing’. The two forms of knowledge were not of equal value in the assessment process, varying in the situated power and influence they could wield. In relation to the second theme, the thesis examined both how parents were subjectified by the processes and discourses of diagnosis and how professionals were subjectified as agents of policy and protocol. Analysis of exchanges between parents and professionals exposed further practices of self-subjection, but also identified some strategies of resistance. Prevalence rates of autism diagnosis and the challenges faced by parents and service providers mean this is currently an area of research of considerable applied significance. This thesis aims to contribute specifically to knowledge about how assessment and diagnostic practice might be improved, ultimately proposing a shift in the approach to autism diagnosis. As such, the third theme, possibilities, examined both the constraints on parents’, and professionals’, discourses in the diagnosis of a child and the opportunities to transcend those constraints. It highlighted the benefits of learning from approaches to diagnostic practices based around open dialogue. Future research could develop the work here to focus on professional meaning-making. It might also consider the complex situation of parents of children referred with autistic characteristics who do not receive a diagnosis.

Diagnosis of autism before the age of 3