There has been suggestion that current diagnostic instruments are notsufficient for detecting and diagnosing autism in women, and researchsuggests that a lack of diagnosis could negatively impact autistic women’swell-being and identity. This study aimed to explore the well-being andidentity of autistic women at three points of their diagnostic journey:self-identifying or awaiting assessment, currently undergoing assessment orrecently diagnosed, and more than a year post-diagnosis.Mixed-methods were used to explore this with 96 women who identified asautistic and within one of these three groups. Participants completed anonline questionnaire, and a sub-sample of 24 of these women participated ina semi-structured interview.Validation was found to be a central issue for allautistic women, which impacted their diagnosis, identity, and well-being.The subthemes of don’t forget I’m autistic; what now?; having to bethe professional; and no one saw me were alsoidentified.Well-being was found to differ significantly across groups in three domains:satisfaction with health, psychological health, and environmental health.These results suggest that autistic women’s well-being and identity differ inrelation to their position on the diagnostic journey in a non-linear manner.We suggest that training on the presentation of autism in women for primaryand secondary healthcare professionals, along with improved diagnostic andsupport pathways for autistic adult women could go some way to supportwell-being. The aim of this study is to explore theinteraction between diagnosis and the diagnostic process, identity, and well-beingfor adult autistic women.Autism is characterized by social communication and interaction difficulties as wellas restricted and repetitive behavioural patterns and sensorysensitivities.3 The phenotype suggested includes females camouflaging theirdifficulties, leading to them not being recognized; their restricted and repetitiveinterests being seen as more ‘typical’ for their age and therefore not being seen asautistic symptoms; and a higher co-occurrence of internalizing disorders.4 Indeed, examining the role ofgender in diagnostic instruments, studies have found that most of the diagnostictools used currently were developed based largely on the observation of boys, andthat many diagnostic tools, including the Autism Diagnostic Observation Schedule(ADOS) and Autism Diagnostic Interview-Revised (ADI-R), are less sensitive to womenand girls.5Others have found six traits and behaviours which consistently show genderdifferences, and which are a barrier to young autistic women gaining an autismdiagnosis: behavioural problems, social and communication abilities, additionaldiagnoses/misdiagnosis, relationships, language, and repetitive and restrictivebehaviours and interests.6 Driver and Chester5 support this, showing that manyautistic women are first mis/diagnosed with mental health conditions, overshadowingan underlying autism diagnosis and stopping further investigation.Some have argued that there could be a ‘female autism phenotype’ which is not pickedup by current diagnostic instruments, contributing to females being misdiagnosed ormissed altogether, leading to the diagnostic differences seen between females andmales with autism.5 found professionals involved inprimary care and in diagnosis to be lacking in knowledge and training, whileLockwood Estrin et al.6 found parental concerns, others’ perceptions, a lack ofinformation and resources, clinical bias, and compensatory behaviours on the women’spart to be perceived barriers to diagnosis by autistic women. Barriers to accessinghealthcare may be one of the greatest difficulties within the process of diagnosisfor autistic individuals, with 80% of autistic adults reporting difficulties aroundvisiting their general practitioner.7 This was associated withincreased adverse health outcomes for autistic adults, and it may be that thesechallenges mean diagnosis itself is not accessible to all autistic individuals. Inaddition, autism stereotypes continue post-diagnosis, impacting autistic women’saccess to support due to the support available being tailored to men or those with aco-occurring intellectual disability.8Understanding the process of diagnosis from autistic women’s perspective is crucial.While diagnosis might open up additional support and understanding, there may befactors that influence whether the process has a positive effect. The stereotype ofautism as a ‘male’ disorder, even within healthcare, can be a barrier to womengaining an autism diagnosis; Driver and Chester9Without a diagnosis, autistic women have been shown to have increased vulnerabilitydue to social difficulties, which can lead to exploitation.10 Therefore,timely diagnosis is crucial in improving autistic women’s well-being and safetygenerally. However, the extent to which diagnosis improves well-being has beensuggested to rely on the level of acceptance both by oneself and others of autisticwomen.11 This study found that autistic women can be exhausted by thediagnostic process, which is exacerbated by the stereotypes they face and the lackof acceptance and understanding of themselves and from others. Therefore, timelydiagnosis and an increase in knowledge and understanding around autism, especiallyautistic women’s presentation, may be key in improving autistic women’swell-being.Timely diagnosis can have a significant impact on autistic women and girls’well-being, with studies showing improved well-being post-diagnosis, and those whoare undiagnosed having worse outcomes. With autistic women being more likely to bediagnosed later in life than men, some may argue that they have made it this far andtherefore do not need a diagnosis. However, the known negative impact of beingundiagnosed on well-being means that even if diagnosis comes later in life, it isstill valuable in facilitating an improved self-understanding and increased accessto support.12 and an historic lack ofdiagnostic availability and information surrounding autistic women’sdiagnoses.8 In addition, Bargiela et al.12 found that masking, both pre-and post-diagnosis, can create confusion for autistic women surrounding theiridentity. Although many women report relief and positive feelings at diagnosis,identity can be negatively impacted due to self-doubt and feelings of grief forautistic women.13 However, this study also found that many women report apositive impact of diagnosis on their identity, due to an increase inself-acceptance and self-reflection post-diagnosis. This can in turn have a positiveimpact on their well-being due to an increased understanding of themselves, theirbehaviours, and their interpersonal relationships. One area which has supportedautistic women to form their identity is social media; Bargiela et al.12 found thatthrough connecting with other autistic women, participants were able to formconnections and identities based on their special interests rather than traditionalsocietal norms for women.Diagnosis (or a lack thereof) could also have a profound impact on autistic women’ssense of identity. The aspects of the diagnostic process which can have a negativeimpact on autistic women’s identity have been found to include generalpractitioner’s (GP’s) dismissing concerns,In sum, previous research documents important relationships between diagnosis,well-being, and identity in autism women. This study aimed to investigate theserelationships further, by considering these issues in women at different stages ofdiagnosis, specifically: those who have not been diagnosed but who self-identify asautistic, those in the process of being diagnosed or who have recently beendiagnosed, and those who are several years post-diagnosis. By comparing these groupson measures of well-being and interviewing them about their identities in relationto their diagnostic status, we aimed to explore how the process of diagnosis impactsautistic women, their well-being, and identities.The research team for this study was neurodiverse, with one autistic researcherand two non-autistic researchers. The researcher conducting the interviews wasautistic and disclosed this to participants before the start of each interview.In addition, the autistic researcher completed the first round of coding whichwas then verified by the rest of the research team.A mixed-methods design was used for this study. Quantitative data were collectedthrough surveys measuring autistic traits, quality of life, and autism-relatedquality of life, and individual characteristics . Semi-structured interviews were then conducted, usinginformation from the surveys to inform interview schedule design, allowingparticipants to expand on their experiences and explore the more specificdetails of these. Data collection took place more than 8 weeks in the summer of2021 for both the questionnaires and interviews.14 which indicated that the minimum sample size requiredto achieve 80% power for detecting a medium effect15 at a significancecriterion of α = .05 was 42 for a one-way analysis of variance (ANOVA).Therefore, the researchers set a target of 50 questionnaire participants to gainsufficient power, and 20 interview participants to gain a rich data set.An a priori power analysis for the quantitative portion was conducted usingG*Power 3.1.9.7Participants were recruited via the researchers’ social media channels whereadverts were posted. Overall, 96 women completed the questionnaire surveys, and24 of these women agreed to also take part in an interview. The inclusioncriteria were that the participant identified as women, had gained a diagnosisin the United Kingdom or identified as autistic and were living in the UnitedKingdom, and were above 18 years of age. The ages of interview participants werenot recorded to ensure their anonymity and that no links were made betweenindividual participants’ questionnaire and interview data. Participants were asked at what stage of their diagnostic journey they were at:Group 1 = self-identifying or awaiting assessment (interviews n = 8); Group2 = undergoing assessment/less than a year since diagnosis (interviews n = 5);and Group 3 = more than a year post-diagnosis (interviews n = 11). Of theinterview participants who were in Groups 2 and 3, 5 participants were diagnosedprivately within a setting separate from the British National Health Service(NHS) and 11 on the NHS free of charge, and 14 participants were diagnosed asadults with only 2 diagnosed in childhood. The age at diagnosis did not appearto lead to a difference in experience for the women in this study, the importantfactor appeared to be the time of acceptance/understanding of the diagnosiswhich for all women was in late adolescence/adulthood. Of the participants inGroup 2, four had been diagnosed in the past year and one was undergoing theirassessment.A Fisher’s exact test was run on the group × age cross-tabulation and revealedthat the proportion of those in different age groups was not significantlydifferent across diagnostic status groups, suggesting that age and diagnosticstatus are independent variables (p = .082).Diagnoses were not verified independently, but 90% of participants met theclinical cut-off point for diagnostic referral on the AQ-10. There was no maineffect of group on AQ-10 score (F(2) = .17, p = .864), indicating that those whowere not yet diagnosed had similar levels of autistic traits to those who had adiagnosis.Ethical approval was gained from the University of Bristol School of EducationEthics Committee prior to the commencement of data collection . Participants provided separate written consent forparticipation in the online questionnaire and interview. Participants initiallycompleted the online questionnaire, with the option to sign-up for an interviewoffered on completion.Participants completed the questionnaires anonymously via their ownelectronic device. The questionnaire surveys were delivered through theUniversity of York’s Qualtrics-XM  and included thefollowing demographic questions: participants’ age range, gender identity,and what stage of their autism diagnostic journey they were at. Measures ofautistic traits and quality of life were also collected, in the orderpresented below. The questionnaires took approximately 15 min tocomplete.16 This tool is usedto assess the autistic traits of adults without a co-occurring moderateor severe intellectual disability, giving us an indication of thelikelihood of an individual being autistic, with a score of 6 or moreindicating high levels of traits and being the cut-off for referral forassessment. As having an autism diagnosis was not a criterion forinclusion in this study, no further measures or confirmatory tests wererun surrounding this.This psychometric measure was used as an indicator of autistic traitlevel of the participants.17 The test has 26questions measuring: overall QoL, overall satisfaction with health,physical health, psychological health, social relationshipssatisfaction, and environmental health.The WHOQoL-BREF was used in this study as a measuring of overallwell-being through the perception of participant’s quality of life (QoL)reported in the survey.18 The questionnairespecifically looks at the participant’s perception of support,friendships, barriers faced, and satisfaction with their identity asautistic.Used alongside the WHOQoL-BREF, this survey pays more specific attentionto factors which have been shown to specifically impact the well-being,and QoL of autistic individuals.supplementary materials) was developed by the research teamto be used as a guide and sent to participants ahead of their interview. Theinterviews were semi-structured, whereby the researcher followed theinterview schedule as a guide, but also asked participants to elaboratewhere necessary or did not ask certain questions if deemed not appropriate.The interview focused on five key areas: the participant’s diagnosticexperience (or anticipation thereof), their identity (or lack thereof) as anautistic woman, their well-being, the support (or lack thereof) they had,and any factors which were beneficial or barriers to them receiving adiagnosis. The interviews took place in July and August 2021 and lastedbetween 20 and 50 min (mean = 36 min). Following the interview, participantswere provided with the option to receive a copy of their transcript andgiven the opportunity to email the researchers with any comments on thetranscript or any further thoughts they had post-interview. Threeparticipants responded with written feedback on their transcript or furtherthoughts, and these were incorporated into their transcripts for analysis.Interview participants each received a £20 Amazon voucher. The audio fromeach Zoom interview was recorded, and a transcript automatically generatedby Zoom which was reviewed and corrected by the interviewer.Individual interviews were conducted by an autistic member of the researchteam with each participant over Zoom as it was not possible to conduct face-to-face interviews due to theCOVID-19 pandemic. Two participants chose to have their cameras off.Participants were made aware of the researcher’s positionality as autisticprior to the commencement of the interview. An interview schedule  before sharing the transcript and coding with the otherauthors for feedback. The first author coded the remaining transcripts andgenerated initial themes, and then the entire team met to discuss the generationof themes and a thematic structure. Saturation was achieved with the data set of24 interviews as the last two interviews coded in each group generated no new codes.Quantitative data analysis was completed using IBM SPSS (version 27.0), whilequalitative data analysis coding was completed using NVivo (version 12).Interview transcripts were analysed by applying inductive reflexive thematicanalysis.A one-way ANOVA revealed there were significant main effects of diagnostic stagegroup on the following measures from the WHOQoL-BREF validation was developedwith four subthemes: Don’t forget I’m autistic, What now?, Having to bethe professional, and No one saw me. Additionalsupporting quotes for each subtheme can be found in the Supplementary Materials. The quotes are drawn from thetranscripts of participants, and each quote is labelled with a participantnumber (PXX), and the diagnostic group they are in (Group X).The overarching theme of My idea of autism was Rain Man, it was the little boy with trains andmaths and so on, and I think probably as most people’s idea at themoment. The majority of participants saw diagnosis as a validation of their identity,which in turn positively impacted their well-being. Having a strongeridentity as an autistic woman was reported to lead to an improvement inwell-being for these women as they were able to make adjustments to theirenvironment and day-to-day life without feeling wrong or guilty about doingso. This supports the questionnaire data which suggest that psychologicaland environmental well-being may improve with diagnosis compared to withoutdiagnosis. Stereotypes were seen as a barrier to diagnosis, and tovalidation, with some participants reporting ‘imposter syndrome’ andworsened well-being due to not fitting the stereotypical image of autistic males:I went to my GP, and I didn’t really know what say, but I just knewsomething wasn’t OK, and something needed to stop, and . . . hestarted off saying, because I go to work every day, that meanseverything’s fine and to me that wasn’t really true, and I thinkmaybe because of my autism, I found it really hard to not go to workevery day . . . I guess for me it’s [diagnosis] that kind of validation I’m after ofthis identity that I found for myself, I kind of feel like I wantit, I want it to feel sort of more legitimate if that makes sense.Others had doubts that they were ‘being silly’ or ‘making it up’ due tofeeling they had previously been gaslit by, or lacked validation from,healthcare professionals. Diagnosis was also seen as validation for thesewomen as it allowed them to access support; prior to diagnosis, they did nothave ‘a piece of paper’ which validated them as autistic, meaning access tosupport was far more limited (if not impossible). Gaining this validationremoved these doubts and improved their well-being through confirming theirsense of themselves as autistic:I’ve spoken to you know couple of late diagnosed women who said,‘well, we lived, we lived our lives up until this point, like we,like we fought quite a lot, like you know we’ve gone against youknow, all these kind of odds, and we’re here like you know howawesome are we’, and it’s like actually yeah and it’s just sopositive, I think, and I think that really helps in theself-identification because you don’t you know want to identify withanything you know too negative. However, some participants reported feeling they did not need a diagnosis, orthat they had had these feelings previously, but that they felt validated byexploring their identity more and interacting with the autistic community onsocial media. Interaction with the autistic community was a validatingexperience for many of the participants, and improved their well-being,especially prior to their diagnosis, as they felt less alone in their experiences:When I got my report back from my diagnostic process and that waslike literally 15 pages of deficits, and I felt really low for acouple of days after that, and I had to kind of really consciouslykind of re-find the positivity. While interacting with other autistic people helped to create a positiveconnection with autistic identity, some participants in Groups 1 and 2 wereundermined by the deficit-based model of psychiatric assessment, and thisreduced their well-being due to having to work to find ways to refocus theiridentity away from only negatives presented in traditional clinical narratives:. . . before I just felt like I was a crumbling mess and I justneeded to pull myself together, and I don’t have that voice myselfanymore either you know telling myself oh I should be, should bedoing better or I should be stronger and tougher and just sort ofexcept like I’m going to cry over really stupid things. Validation also came for some participants in the form of understandingthemselves and their experiences; participants reported that having anautistic identity or diagnosis allowed them to be kinder and more acceptingtowards themselves and their difficulties. Furthermore, in regard tostereotypes, many participants also reported the diagnosis to be validatingas it relieved their feelings of failing as a ‘stereotypical woman’:she sort of repeatedly said things that indicated that she didn’tmind if I behaved odd and she said, that was her thinking that shewas being welcoming and inclusive; I don’t mind if you’reuncomfortable, I don’t mind if you look weird because you’reuncomfortable, that’s fine you be weird I’m not going to changeanything, because I know I’m absolutely fine. The extent to which participants felt the diagnostic process and anysubsequent support services were autism-friendly varied across ourparticipants: some participants described themselves as having traits whichthey felt were forgotten or ignored even by those who they had disclosedtheir autistic identity/diagnosis to:. . . it was just like ‘Oh, they really understand my needs’ becausethey had photos and biographies of everyone you were likely to meet,they had photos of all of their consulting rooms, a map, a photo ofthe outside of the building, so it was as if they anticipated all ofthe things that were likely to worry me. Others noted instances where they felt particularly welcomed as an autistic person:The wording was something like you know she meets the criteria for apositive diagnosis, should this be something that she wants, youknow, so it was and I, and I talked about this at length with thepsychologist like over the following couple of years, because Ithought I felt uncomfortable about this idea of it was my choice. . . I’d sort of seen the diagnostic process as kind of drawing aline under that and going, you are, or you aren’t. Some things described by participants reflected the interaction betweenautistic traits and diagnostic experiences. For example, feeling the needfor ‘definitive’ validation of their identity by a professional, which couldbe linked to having inflexible thinking styles. When this was not made clearby the professional, this led to confusion around their autistic identity,which had a negative impact on well-being.It’s kind of a bit of a struggle, there’s a lot of anxiety andthere’s a lot of uncertainty as to how I’m going to navigate theworld with this new identity. Equally, finding it difficult to adapt to having a new identity as‘confirmed’ autistic may be linked to dislike of change and intolerance ofuncertainty, such as around how people will react to this information:I sort of anticipate that because I’ve gotten fairly good at sort ofpresenting myself as a somewhat articulate and competent adult, thatI’m not going to be taken seriously, and I’m not going to be able toconvince people of the struggles that I do have. It feels like quitea scary thing. Furthermore, participants reported the impact of masking on theirrecognition, diagnosis, and validation; participants told us of thedifficulties they faced with assessments due to facing the dilemma of havingto ‘unmask’ to be diagnosed, which at times felt impossible due to howintertwined their true persona had become with their mask, or they wouldcontinue to mask, and the assessor would not recognize their autistic traits:Video chatting like this, I find okay, but like on the phone I reallystruggled with and it kind of felt like because you couldn’t get,see anyone face to face, it was like I then couldn’t even talk onthe phone because I, that was like a barrier for me. Further barriers and positive factors when seeking support for autistic womenwere reported around communication and practicalities: especially since dueto COVID healthcare in the United Kingdom was moved to phone and video callappointments. This brought some benefits as women did not have to travel andnegotiate public transport to attend appointments. However, for many of theparticipants, appointments became inaccessible, or access was restricted dueto anxieties and difficulties in communicating when using the phone or videocall. This negatively impacted their well-being, both psychologically and insome cases physically, as access to care was more difficult:I don’t feel valid [to ask for support] because I haven’t got theformal label diagnosis and stuff and a lot of the time when you sayI’m awaiting diagnosis it’s like ‘no, you need formal diagnosis’ andit’s like I can’t get that yet – that’s a nightmare. Participants from all groups discussed the long waiting times (6 months tomore than 3 years) between referral and assessment, especially for thoseundergoing assessment through the NHS. For some, this gave them time tolearn about autism and work out what being autistic meant to them, butoverall, delays were linked to worse well-being for participants:I got diagnosed and then I had like one post-diagnostic session . . .It would have just been nice I don’t know just to, like I don’t knowI felt like I was diagnosed and then like waved off on my way as,like it’d be nice if I could have just had like a couple moresessions, just like talk it through and just like dunno, process itwith somebody. In addition, participants from all groups reported a lack of clarity in thediagnostic and support pathways for autistic adult women. Many participantsfelt like there was no clear pathway for them to follow from initiallythinking about being autistic to discussions with a GP, and onto diagnosis,and that even post-diagnosis there was a lack of clarity as to where theycould access support, if any:So, yes diagnosis: useless, in fact damaging. But the group,post-diagnosis group: brilliant, can’t recommend it enough, I thinkthat should be mandatory, you don’t just spin people off and leavethem with this bit of paper that may or may not be accurate. Furthermore, participants reported that even though there were many positivesto identifying or being diagnosed as autistic, the experience of going backover old memories and past experiences with a new ‘autistic lens’, both pre-and post-diagnosis, was a traumatic one. Several participants discussedfeeling the need to ‘unpack their past’ and that this had to be done withoutsupport. This depicts the participants’ feelings that there is not a smoothjourney after identifying/diagnosis, it is not simply a matter of ‘takingoff the mask’ and moving on with life as an autistic woman, but that thereis still work to be done and that the experience can be traumatic andpositive. For some participants, post-diagnostic support with other autisticpeople was helpful to combat some of these negative effects of thediagnostic process:Relating to the statistical results, participants from Groups 1 and 3reported a feeling of growing into their identity, unlike Group 2. Thiscould suggest one reason behind the pattern seen in the psychologicalwell-being graph, whereby during pre-diagnosis waiting or while beginning toself-identify, there is still a feeling of uncertainty which lowerswell-being, then when a diagnosis is gained there is a lot of optimism, andparticipants feel they have found their identity, but as time passes thewomen feel that they still are growing into their identity, which links withthe reports of unpacking and going through traumatic experiences due to thatcome from Group 3.Yeah, so basically, I went to the doctors and I’d already researcheda national autism website like how you should go to the doctors, soI printed off all the information because, like I also know that I’mquite a competent, I can come over as quite a competent person, so Iprinted off all of the information and took it to the doctors andsaid ‘I want to have it, an assessment for autism, this is all thereasons why this is the information from National Autistic Society,this is how you should refer me’, so I even told them like what mylocal area’s process was and, and then she said okay I’ll refer youon to the next step. it feels very much like the onus is on you as an individual to makethe assessment happen, rather than a medical practitioner saying‘this is something that we should see’ or we should, you know justanything any kind of update, or any kind of knowledge that they sentyou on a referral and you’ve not heard anything back. Many of the women reported having to do their own research to learn aboutautism, where to get support, where and how to seek a referral fordiagnosis, and their rights. Some people report enjoying aspects of thisresearch and learning about autism more generally; however, this themeencompasses the more negative reports of having to do research due toprofessionals lacking knowledge:When I interviewed for a job, I didn’t tell them because I wasworried that it would impact on that, and I kind of wish I had toldthem . . . I think it might have helped me with better support, butat the same time, I was just so worried about like being turned downfor it because I went for a volunteer job once and put on that I wason the autistic spectrum and I got turned down, and I do think itwas because of that. So, sometimes when I’m comfortable with peopleI tell them that I’ve got the diagnosis, and then like in jobinterviews I won’t tell them until it’s like needed, they need toknow. Furthermore, participants from Groups 1 and 3 reported feeling a need toeducate the wider population and be ‘a professional’ in the field in thissense too, due to feeling a lack of understanding and that there is stilldiscrimination against autistic individuals. This led to reports of notwanting to disclose or share their identity for some of the participants:I think it would have been good to have signposting from one agencyto another . . . but nobody ever said that, so I just had to likeGoogle, I was asking my counsellor and asking all these otherpeople, and it just, it’s so exhausting. This reluctance could help to explain the survey results seen in thepsychological and environmental health categories; that Groups 1 maystruggle more with feelings of needing to educate others due to beginning toconsider autism, and Group 3 due to being diagnosed for some time, and theirstruggles around disclosure. In addition, those in Groups 1 and 3 reported alack of follow-through on discussions with professionals, suggesting thatsupport into getting into and out of the diagnostic process is when peoplefeel they lack professional support, compared to directly when they aregetting the diagnosis:I can do that a lot better than I used to. I’m sure, like thetherapist would want to be like oh yeah that’s because of me, andyou know or the psychiatrist, but I think honestly, I’ve done a lotof the work myself. In summary, most participants across the groups reported experiences of beingdisbelieved and dismissed by healthcare professionals, lacking support fromhealthcare professionals, and even when support was given that manyprofessionals lacked knowledge of autism and how to support an autistic person:I think it was definitely not picked up because I was a woman . . .I’m very high functioning, I think people think that I’m like makingan excuse or I’m like making it up . . . I do feel a bit let downsort of for my whole adult life I’d been told that I was mentallyill and actually no that wasn’t the case I was perfectly healthy.The majority of women interviewed reported a lack of support throughout theirlife, from childhood through to adulthood, especially in school; manyreported being bullied, not fitting in, not being supported as peoplethought there was ‘nothing wrong with them’ during their school years, andsome specify that they believe school to be where they started masking. Someparticipants also reported that they slipped into the character of a ‘goodgirl’ at school as this is how they were labelled by teachers. Masking formany participants was described as the reason as to why no one ‘saw them’and supported them, then or now, whether they were aware of it at the timeor not:Everyone seems to have that kind of image of like the typicalautistic person is like Sherlock Holmes or Sheldon Cooper, and ifyou don’t identify with that, you’re probably not autistic . . .it’s not actually, as you know, black and white as the media mightmake it out to be. In terms of visibility, many women reported a lack of autistic womenportrayed in the media. However, when autistic women were seen in the media,this was beneficial to participants with several reporting this was how theyfirst began identifying traits in themselves:At the end, she told me she said, like I’m certain that you’reautistic and then she told me that her daughter is and she’s likeyou, like the way you are reminds me so much of her, so I thinkthat’s why I felt understood by her. Multiple participants reported that professionals who did understand orrecognize were those with lived experiences of autism themselves (eitherbeing autistic themselves or having an autistic family member):The aim of this study was to investigate autistic women’s diagnostic experiences inrelation to their identity and well-being. Overall, our results suggest thatdiagnosis, identity, and well-being are closely interlinked. These results partiallysupport other work showing interactions between diagnosis, identity, and well-beingfor autistic women, but importantly we highlight for the first time that theseeffects change throughout the diagnostic process: it is not the case that well-beingautomatically improves with time, but that validation through diagnosis,understanding, and acceptance impacts well-being and identity the most. Getting adiagnosis appears to improve the aspects of well-being and identity at the point ofdiagnosis through providing validation and the provision of some answers, butlonger-term women can struggle with their identity as autistic and with accessingsupport, which is supported by the results of the quantitative questionnairesshowing psychological and environmental health do not increase linearly along thediagnostic pathway. As all but one of our interview participants werediagnosed/seeking diagnosis in adulthood, this study mostly provides evidence forthe impact of diagnosis on adult autistic women’s identity and well-being.5 Participants in this study reported that this leads to themfeeling unseen and as though they must be the professional themselves, therebyrisking the validation they are seeking – which negatively impacts well-being andidentity.Many of the difficulties with diagnosis, identity, and well-being reported in thisstudy surrounded the health and social care provided, or the lack thereof. This canbe seen both in the interview data and in the low scores for health-relatedwell-being from the online surveys. This supports other reports that cliniciansinvolved in the diagnostic process are often not adequately trained or knowledgeableabout autism in women.20 it is unsurprising that waiting times were some of the mostcommonly reported barriers for the women in this study when seeking a diagnosis, andthat these could lead women to seek a private assessment as they felt they neededthe ‘answer’ sooner than the NHS could provide. The process for seeking and gainingand assessment in other countries in private or public services may differ to theUnited Kingdom; therefore it is important to bear in mind these results may not begeneralizable across countries and services.As research has shown that many UK services fail to provide timelyassessments,21 despite showing similar clinical profiles:22 this suggeststhat non-Caucasian autistic people may similarly not fit an autism stereotype,leading to delays in referral and diagnosis. Non-Caucasian autistic women may thusbe at double risk of being missed, due to their ethnicity and their gender. Inaddition, due to the methods of data collection, the study focused on thereflections of autistic women who were able to respond to a written questionnaire,and for the interviews were verbal. Therefore, the experiences and reflections ofthose who could not read, had a severe intellectual disability, or were non-verbalwere missed. In future, research should aim to further this study to includenon-binary individuals as non-conformity to a binary gender may further impact anindividual’s sense of identity and need for validation.This project was the first to use mixed-methods approaches to provide evidence aboutthe role of diagnosis in autistic women’s well-being. However, we note severallimitations to the current work that will need to be addressed in future projects.Our statistical tests were conducted on a relatively small sample. Our sample wasBritish women: this means that we are missing important experiences from women ofother nationalities. Indeed, reports have shown that non-British black and Hispanicautistic children are diagnosed on average later that white autisticchildren23 Asking participants toquantify the strength of their identification and validation could also allow forstudies to examine how these factors change over time: this study used across-sectional design but longitudinal work that follows women through theirdiagnostic journeys would also allow for future examination of how diagnosis impactidentity and well-being over time.Examining the extent to which participants felt they identified as autistic might besomething for future research to consider: we did not include this in ourquantitative study, but the extent to which individuals feel strongly connected toan autistic identity could vary, and the strength of this identity could haverelationships to well-being.Notwithstanding these limitations, our report has several implications for practice.First, reduced waiting times and clearer diagnostic pathways for autistic adults,especially women, are needed. Second, health care professionals should be mindful ofthe impact they can have on autistic women’s feelings of validation. For example,while it is common to write a diagnostic report that details the deficitsindividuals showed, which are used to confirm the presence of autism, several womenfound these reports to be discouraging.24 and identity building work.This may be helped in part by our third recommendation, that greater post-diagnosticsupport is offered: this may help to mitigate some of the negative impacts ofreading a diagnostic report that documents one’s shortcomings. We would recommendfurther work to examine when the timing of this post-diagnostic support is mostsuitable. A single post-diagnostic session to discuss diagnosis shortly after it isgiven may be too soon, and given that women’s well-being appears to peak shortlyafter diagnosis and then wane over time – a year or more after diagnosis – it may besuitable to consider whether support after a year could be offered. This couldinclude some trauma focusedFinally, training on the presentation of autism in women and girls for primary andsecondary health care professionals is needed. Participants reported experiences ofbeing told they were likely not autistic because they were working or because theyhad not been identified as autistic as a child: assumptions such as these needchallenging, as it suggests health care professionals may assume that because autismis a lifelong disorder that all cases would have been detected in childhood. Thismisses the point that for some individuals, they are able to cope and mask theirautistic difficulties into adulthood, when they nonetheless would benefit fromdiagnosis and support.In conclusion, we found that autistic women’s well-being and identity interacted withthe level of validation they felt of said identity by themselves and others,specifically healthcare professionals. Validation was seen to be associated withdiagnosis for many of the women, suggesting initially that well-being and identityfor autistic women are improved with diagnosis. However, well-being and identitywere negatively impacted for autistic women due to a lack of support, both pre- andpost-diagnosis, from health and social care professionals; long waiting times,lacking post-diagnosis care or support, and insufficient knowledge on theprofessionals’ part are reasons for this. Future work should aim to quantifyautistic women’s feelings of validation and correlate these with quantified measuresof autistic identity strength and well-being to explore this further.Click here for additional data file.Supplemental material, sj-docx-1-whe-10.1177_17455057221137477 for Autisticwomen’s diagnostic experiences: Interactions with identity and impacts onwell-being by Miriam Harmens, Felicity Sedgewick and Hannah Hobson in Women’sHealthClick here for additional data file.Supplemental material, sj-docx-2-whe-10.1177_17455057221137477 for Autisticwomen’s diagnostic experiences: Interactions with identity and impacts onwell-being by Miriam Harmens, Felicity Sedgewick and Hannah Hobson in Women’sHealthClick here for additional data file.Supplemental material, sj-docx-3-whe-10.1177_17455057221137477 for Autisticwomen’s diagnostic experiences: Interactions with identity and impacts onwell-being by Miriam Harmens, Felicity Sedgewick and Hannah Hobson in Women’sHealth


Background: After repair of esophageal atresia (EA), children risk digestive and respiratory morbidity, but knowledge of their health-related quality of life (HRQOL) in China is lacking. The EA-QOL questionnaires were developed in Sweden and Germany to evaluate condition-specific HRQOL in children with EA aged 2–7 and 8–17. This study aimed to evaluate the linguistic and content validity of the Chinese Mandarin version of the EA-QOL questionnaires. Methods: The procedure was conducted in compliance with international standards, including a forward-backward translation procedure, expert reviews, and cognitive debriefing interviews with 14 Chinese families of children with EA (parents of 8 children aged 2–7/6 children aged 8–17 and their parents). Results: Following forward-backward translation, minor issues were identified and solved. In interviews, all participants rated all EA-QOL items easy to understand, none expressed negative emotions about them and most described them comprehensive and relevant for EA. Leading from cognitive debriefing, three EA-QOL items in the questionnaire version for children aged 2–7 and three EA-QOL items in the questionnaire version for children aged 8–17 were modified in the Chinese language to improve cultural appropriateness and/or clarity. Conclusion: The Chinese Mandarin version of the EA-QOL questionnaires achieved satisfactory linguistic and content validity. This can help increase focus of HRQOL in research and clinical practice of children with EA in China. Esophageal atresia (EA) refers to a discontinuity of the esophagus and has an incidence of 1/2500–1/4500 . AlthougAccording to the World Health Organization, the concept Quality of Life (QOL) refers to an individual’s perception of one’s position in life in the context of the culture and value systems in which they live, and in relation to their goals, expectations, standards and concerns. QOL is multidimensional and incorporates a person’s subjective experience of his/her physical, psychological and social state . The terIn children with EA, HRQOL research have expanded the recent years; however, no study of children with EA living in China has been reported ,11,12. IIn congruence with international standards of patient-reported outcome measurement, the EA-QOL questionnaires were developed based on condition-specific HRQOL experiences reported in focus groups with children and their parents from Sweden . The repThe translation process was guided by the International Society of Pharmacoeconomics and Outcome Research (ISPOR) Principles of Good Practice for the Translation and Cultural Adaptation Process for Patient-Reported Outcomes Measures , includiAfter signing the License and User Agreement of translation and validation of the EA-QOL questionnaires, the key-in country person (SL) was provided a study protocol in English. In agreement with the abovementioned recommendations by ISPOR principles , the stuThe process of translation and harmonization is outlined in Cognitive debriefing is a standard procedure to perform interviews with respondents from the target population of an instrument, in order to test and provide evidence of its content validity. It refers to a research technique which aims to identify and resolve unclarity or inadequacy in wording or cultural appropriateness of the translations, thereby optimizing the children’s and parents’ understanding of the items . We usedThe cognitive debriefing interviews were conducted by a researcher with experience of communicating with pediatric patients and their parents, but who was not personally involved in the treatment of children with EA. The cognitive debriefing interviews were conducted one-on-one through video calls, and hence the interviews with children aged 8–17 years and their parents were conducted separately. Approximately one week prior to the interview, participants received an informed consent form (ICF) and a copy of the questionnaire through WeChat—a communication service application . They weContent validity refers to evidence that the questionnaire instructions, items, domains and response scale are appropriate relative to their intended measurement concept, population and use ,33. TherThe Chinese Mandarin translation of the EA-QOL questionnaires was reviewed by the key-in-country person (SL) to check for accuracy compared to the US English version of the EA-QOL questionnaires.The finalized Chinese Mandarin translation of the EA-QOL questionnaires was proofread by the Chinese research team to check for minor errors, which could have been missed during the translation process. For this final report, the author team aimed to explain the methodology of use, reasons for all translation/wording choices and decisions undertaken throughout the translation process.Two forward translators completed the translation of the questionnaire from US English to Chinese Mandarin language independently. In the process of reconciliation, a few minor discrepancies were detected and solved. For example, there was a difference in the translation of “a full meal”, whether it regarded a large (大份) or a normal-sized (正常量) meal. Following reconciliation, it was translated into a normal-sized meal. Moreover, the word “complicated (复杂)” was translated into “difficult (困难) “, but was changed to the first mentioned concept, consistent with the original wording.A total of 14 families of children who had been surgically treated for EA participated in the cognitive debriefing. The study sample included 8 children aged 2–7 years , four of whom were considered to have mild, two moderate and two severe EA. Moreover, 6 children aged 8–17 years , three were represented mild and three moderate EA. All participants rated all questions of the EA-QOL questionnaires for children aged 2–7 years and 8–17 years as clear and easy to understand, and none expressed negative emotions about any of the issues or felt that the items were sensitive to answer. According to the participants, the questionnaires were adequate and targeted for EA and covered content of all possible problems children with EA may encounter. No complaints were made on the questionnaire instructions or response scale.One item of the EA-QOL questionnaire for children with EA aged 2–7  and for children aged 8–17 years, respectively , both include the expression “food gets stuck in the throat”, which were literally translated as “食物卡在喉咙里” in Chinese Mandarin language. However, most participants stated that food often gets stuck in the esophagus, not the throat. Since “food gets stuck in the throat” was an idiomatic expression, the final Chinese Mandarin translation was adjusted to “食物卡在食管里”.The term “choke” has two meanings in Chinese Mandarin language, namely “food gets stuck in the esophagus and compresses the airway, preventing the child from breathing normally (窒息)” and “cough caused by inhalation of food into the trachea while eating (呛咳)”. The word “choke” is used in one item of the EA-QOL questionnaire for children aged 2–7 years  and two items of the EA-QOL questionnaire for children aged 8–17 years . Since most participants recognized the second situation and this maintained the conceptual equivalence, we retained this wording.In one item of the EA-QOL questionnaire for children aged 2–7 years , parents are asked about their child’s experience of having problems to eat food at a party or when he/she is out with friends. Few parents in the cognitive debriefing would let their child go to parties or eat with friends, because their child’s food needs to be prepared by themselves. This would make it unfeasible for parents of children who have not dined outside home to reply to this item. It was therefore adjusted in wording to increase clarity in a Chinese setting, to ask about problems for the child to attend parties or being out with friends due to eating difficulties. The final Chinese Mandarin translation was adjusted to “您的孩子参加聚会或与朋友外出吃饭时是否有问题”.The qualitative results attained through the cognitive debriefing with parents of children aged 2–7, and with children aged 8–17 and their parents are presented in The Chinese translation of the EA-QOL questionnaires reached accuracy in the final comparison to the US English version of the EA-QOL questionnaires.The finalized Chinese translation of the EA-QOL questionnaires were successfully checked for minor errors which could have been missed during the translation. The final Mandarin translations of the EA-QOL questionnaires for children aged 2–7 and 8–17 years are provided in This study described the translation, initial cultural adaptation, and content validity of the Chinese Mandarin version of the EA-QOL questionnaires for children and adolescents, prior to commencing our field test study. To the authors knowledge it is the first report of HRQOL in pediatric patients with EA from China, obtaining both children’s and parent’s perspectives.In China, we urgently need an indicator to understand the outcomes of survivors after repair of EA. Moreover, a HRQOL questionnaire could help guiding postoperative monitoring of the child’s health in follow-up care and family support . The neeIn this study, the forward-backward translation of the EA-QOL questionnaires showed good results and minor issues were easily solved. Moreover, in line with the ISPOR principles, the procedure also identified one issue carried on to the cognitive debriefing in order to await the respondent’s view on the accuracy of the Chinese Mandarin translation. In order to achieve accurate, cross-culturally and conceptually equivalent versions of the EA-QOL questionnaires, formal methods of translation and adaptation need to be applied. Such international recommendations of translation are available to standardize the terminology, procedure and prevail poorly translated instruments that threaten the validity of research data, including in global data sets and meta-analysis of the measured HRQOL outcomes . HoweverFollowing translation, the cognitive debriefing of the Chinese Mandarin version of the EA-QOL questionnaire was conducted in agreement with international recommendations; it focused on all relevant aspects of the instrument including the instructions, items, concepts, vocabulary and in age group 8–17 years, children were interviewed regarding the self-report and parents regarding the parent-proxy report of the EA-QOL questionnaires. Furthermore, the cognitive debriefing reached the recommended sample size in the literature ,30,37. IBased on the results in the cognitive debriefing, the Chinese version of the EA-QOL questionnaire achieved content validity, as all items were considered understandable, relevant and comprehensive. Most of the participants were open and enjoyed helping with their experiences. However, the cognitive debriefing also identified three issues within the eating domain. Two concepts were adjusted to the appropriate linguistic use in Chinese Mandarin language and one item was reworded to better suit the Chinese family behaviors. Moreover, the cognitive debriefing shed light on aspects which currently did not require cultural adaptation, but still will be important when interpreting the future field test results. This regarded the implied social behaviors of people in China, including family communication patterns in children aged 8–17. For example, children’s feelings of it being complicated to explain EA to other people may be related to how they are exposed to other people’s questions and to how much the children are educated by parents or healthcare professionals about their condition. We found that some parents revealed the real situation to their child very briefly and that they and their children chose not to discuss EA with other people. Furthermore, some parents did not want to tell their children about EA and declined study participation. This is in line with Matza et al., suggesting that there may be cultural differences in the information that is revealed to children about a disease, and variations in the level to which children are regarded as self-reliant reporters of their HRQOL  and incrThe study sample achieved the size and was stratified to ensure that children with different severity of EA was represented in the cognitive debriefing in accordance with suggestions made in previous literature, Still, this study is limited by use of convenient sampling, with participants recruited from populations attending follow-up at two hospitals in China, and by the fact that several families declined study participation. The variation in the children’s access to follow-up care after repair of EA in China, different socioeconomic conditions among the families and communication patterns of among the affected families to speak with their child about EA represents aspects that could influence children’s perception of their HRQOL. This illustrates the complexity of HRQOL research and should be considered in relation to our study findings. Moreover, this study was limited to focus on the Chinese Mandarin language, and not Chinese Cantonese language, which is also spoken among citizens in China. Additionally, when a HRQOL questionnaire for children is evaluated in a new country, consideration of possible differences in educational system between countries are recommended, because it could impact the understanding of HRQOL items . In the The Chinese Mandarin version of the EA-QOL questionnaires for children aged 2–7 (parent report) and children aged 8–17 (child and parent report) achieved sound linguistic and content validity. As perceived by the participating families of children in China, it represents a targeted tool for HRQOL of children and adolescents with EA. Following, further psychometric evaluation of the Chinese Mandarin version of the EA-QOL questionnaires in a field test, these questionnaires can be made available for research of children with EA This study can in the long-term contribute with an increased focus of HRQOL research and clinical practice of children with EA living in China.


Pricing the Priceless Child to the new millennium. Zelizer documented the transformation between the 19th and 20th century from an “economically useful” to an “emotionally priceless” child. She observed that by the 1930s, American children were practically economically worthless but invested with significant emotional value. What has happened to this emotionally priceless child at the dawn of the new millennium? Has there been a new transformation in the social value of children, and, if so, what might have such a transformation entailed? To address these questions, we examine overtime trends that point to increasing devotion of resources and time to children’s education, a key input in the exceedingly influential human capital theory, which connects investment into children’s human capital with their future market value. Therefore, we argue that the priceless child 2.0 is a useful-to-be human capital investment child. We use four empirical examples of overtime growth in children’s human capital investment: (a) enrollments in early childhood education, (b) federal spending on early education, (c) federal spending on K-12 programs, and (d) parental spending on child care, education and extracurricular activities. In the conclusion, we discuss some potential consequences and concerns about raising children as human capital investment.This article takes Viviana Zelizer’s  Pricing  Pricing the Priceless Child, a magisterial work on the changing social value of children in the United States between 1870 and 1930. Zelizer began her analysis in the period when children held notable economic roles as contributors to the family welfare, often working as factory laborers. However, cultural and economic transformations of the early 20th century undermined the importance of children’s economic utility to the household and, instead, led to what Zelizer called sacralization of children as emotionally priceless. Children came to occupy central locations in the emotional life of the family just as they were moved to the periphery of the household’s economic sphere. In Zelizer’s words, “[t]he newly sacred child occupied a special and separate world, regulated by affection and education, not work or profit” (p. 209).In 1985, Viviana Zelizer published Zelizer’s , 1985 hiRegrettably, there are but a few empirical studies that provide a window into cultural understandings of children and their social value at the dawn of the 21st century. A rare piece of evidence comes from historian Julia Wrigley’s  analysisx), intensive mothering describes strong cultural norms for mothers, “to expend a tremendous amount of time, energy and money in raising their children,” from birth through the transition to adulthood. In the past few decades, sociologists have written extensively on not only intensive mothering but intensive parenting .In the last chapter of The quote with which Zelizer begins her last chapter is telling. She takes from Sarane Boocock’s  essay inFirst, let’s interrogate the possibility that Zelizer entertains about the new emergence of a valuable “housechild.” How much have children contributed to the household since the 1980s? Have there been increasing or decreasing trends? To be sure, it is hard to generalize to all children. For instance, research points to the productive role especially of immigrant children, who often serve as interpreters to the family and as supporters with schoolwork and homework for younger siblings . She references work of psychologist Mary Engel and collaborators  who founWhat evidence do we have about how much children actually engage in paid work in the United States, and what have the trends been over time? We consult here again Sandra Hofferth’s  studies Moreover, the decline in time children aged 9 to 12 spend in paid work is consistent with a broader downward trend in teen labor force participation. Looking at data from the U.S. Bureau of Labor Statistics, Current Population Survey, labor force participation amongst teens aged 16 to 19 years peaked in 1979, with 57.9% of teens in the labor market. The 2000s saw the greatest decrease in teen labor market participation, with 52% participating in 2000 and just 34.3% participating by 2015. The Bureau of Labor Statistics projects only a 24.6% teen labor force participation rate by 2024. Perhaps more starkly, looking at labor market participation in the summer, when labor market participation was historically highest amongst teens, we see similar substantial decreases. While some 63% of teens participated in the labor market during the summer of 1950, only 43% were participating in the summer labor market by 2016 Morisi, .So, what do children and teenagers do if they don’t work? When asked for the major reason for their non-involvement in the labor force, an overwhelming majority, 92% in 2014, cited “going to school” Hipple, , which hIn the past few decades, there has been a significant rise in educational investment in children. Economists frame this effort as human capital development, whereby, according to human capital theory, education increases future productivity and wage returns in adulthood. As such, pricing the priceless child 2.0 might mean building children’s human capital. To develop our argument, we will first describe the theory of human capital and its popularization and then show empirical evidence from the United States, across four different domains of public and private educational investment, which is consistent with the argument that contemporary children’s social value is increasingly placed on their human capital.Pricing the Priceless Child. In this section, we describe key features of human capital theory, and its measurement, that are relevant to understanding changes in the social value of children.While human capital theory was developed starting in the 1960s, its prominence grew after Zelizer’s  publicatWhile the earliest form of the term “human capital” can be traced to the 1890s, the theory became more developed and primarily associated with economist Gary Becker in the 1960s Becker, . Becker Human Capital quite simply as “activities in the present [that] affect future well-being” , this literature has focused on skill development – conceived as human capital development - before children enter school  and private (by parents) domains.To document the transformation from an economically useful to an emotionally priceless child, Zelizer  examinedLikewise, we will document monetary processes that would reveal a potential new cultural definition of childhood that we expect has taken hold, the one related to increasing focus on building children’s human capital. Specifically, we will show the overtime trends in (a) enrollments in early childhood education, (b) federal spending on early education, (c) federal spending on K-12 programs, as well as (d) parental spending on child care, education and extracurricular activities. Focusing on these four examples we don’t mean to suggest that these are the only important processes that have taken hold related to children. Nevertheless, following Zelizer, we consider them revelatory of the social meaning of money whereby monetary spending indicates investment into outcomes deemed valuable by society, in our case, prizing human capital formation in children.In the first half of the 20th century, children typically did not begin formal schooling until age 5 or 6   enrollments in preprimary education, (b) federal spending on early education, (c) federal spending on K-12 education, and (d) parental spending on child care, education and extracurricular activities. These all pointed to significant overtime growth in investment in children’s human capital that would, or so the theory predicts, shape children’s future usefulness and productivity. In brief, we argued that the priceless child 2.0 is a human capital investment child.We argued, no. We proposed that the new utility of a late 20th and 21st century child has come to be understood as their Pricing the Priceless Child. According to Zelizer,One can detect early glimmers of the 21st century “human capital investment child”. By the 1940s, for instance, children’s life insurance policies, initially sold as burial insurance for poor children, were now being touted as “nest eggs” creating funds for their education. Even earlier, an adoptive couple was reported applying to the New York State Charities Association for a three-month-old baby “who could eventually go to Princeton.” Jumping forward to the recent pandemic, parental concern with their children’s education tangibly impacted household economies. With stay-at-home orders and online schooling, mothers (more often than fathers) took over home schooling responsibilities, sometimes at the expense of keeping their paid employment.”16We also had a unique opportunity to ask Professor Zelizer to comment on the potential recent transformation in the social value of children that may have taken place after her analysis in We hope to inspire other researchers to elaborate on our thinking and present further evidence about, or against, the centrality of human capital investment in how social scientists and policy makers, as well as parents, think about children. We also hope to stimulate studies to better understand the consequences of these human capitalization processes. Some voices of concern already exist. For instance, political theorist Wendy Brown makes the case that thinking of education “as primarily valuable to human capital development, where human capital is what the individual, the business world, and the state seek to enhance in order to maximize competitiveness… undermines democracy itself” Brown, : 176. Al