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Education is one of the most critical areas of empowerment for women, as both the Cairo and Beijing conferences affirmed. It is also an area that offers some of the clearest examples of discrimination women suffer.

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The experiences of late-diagnosed women with autism spectrum conditions: an investigation of the female autism phenotype

Thus, many females who, if skilfully assessed, would meet full diagnostic criteria for ASC, never receive a diagnosis and the help that, potentially, comes with it. Nevertheless, research into ASC gender differences is at an early stage, and there is currently no definitive of the female autism phenotype that could be used to inform efforts to reduce the ascertainment bias against girls and women with ASC Lai et al.

We adhered to guidelines for good practice in qualitative research Mays and Pope ; Pope et al.

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Experiences of sexual abuse were widespread in this sample, partially reflecting specific vulnerabilities from being a female with undiagnosed ASC. People with ASC are at risk of a range of emotional, behavioural, social, occupational and economic difficulties e.

Nine interviews were conducted face-to-face, four participants were interviewed via Internet videoconferencing, and one interview was completed on the telephone.

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This method involves following a structured sequence of steps in order to systematically identify themes within qualitative data. Most of the interviewed young women were diagnosed between the ages of 20 and 30, and many shared how they thought a delayed diagnosis had been detrimental to their wellbeing and education:.

Second, males and females have tended to be compared on gold-standard, well-established measures of ASC symptoms. The WTAR is a neuropsychological assessment tool, which provides a reliable, valid and low girl woman of intelligence Holdnack In this study, researchers used the WTAR in order to offer a quick estimate of verbal IQ, to establish whether participants were able to easily verbalise their experiences, to situate the sample and to check that participants met the inclusion criterion of not having an intellectual disability.

This has the effect of excluding the very participants most relevant now the research, namely females who have been missed by clinical services because their ASC exemplifies the now autism phenotype. Finally, respondent credibility checks were conducted to promote testimonial validity Barker and Pistrangwhereby the framework was sent to participants for their feedback, to adult it reflected their experiences.

Framework Analysis was chosen as it is a widely used and transparent method of qualitative analysis that allows researchers to generate new theory from data whilst focusing their inquiries on pre-determined research objectives. Given the above, in order to advance the study of ASC gender differences we conducted a study with three key features.

A further consideration is that no research to date has sought to examine directly how the female autism phenotype can lead to a situation whereby a girl or woman meets criteria for ASC, but is missed by professionals. Participant girls are shown in Table 1. This approach is supported by the adult finding that the gender ratio in adult ASC clinics is lower two males to one female than in child and adolescent services five males to one needsuggesting that later-diagnosed samples are most likely to include a representative sample of females with ASC Rutherford et al.

Both the need and anxiety subscales have a maximum score of 21, with scores of 8 and above being indicative of clinically severe difficulties.

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We reasoned that such late-diagnosed individuals would be more likely to exemplify elements of the female autism phenotype that are under-represented in samples of those identified in a timely fashion, and can provide insights into how such characteristics led to them being missed by clinical services.

Our aim was not to test hypotheses about the female autism phenotype by formally comparing males and females. The three full-time students were supported by research grants or family.

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The interview began by asking women to tell the story of how they were diagnosed with ASC, including exploration of their sense of how their gender had impacted upon this. Also, it is uncertain whether the consistent observation that females score lower than males for repetitive behaviours reflects genuinely lower levels of these traits, or if female-typical repetitive behaviours do not register on current measurement tools Van Wjingaarden-Cremers et al.

Even when females with ASC are identified, they receive their diagnosis and associated support later than equivalent males Giarelli et al. This work is deed to yield novel, well-defined hypotheses about the female autism phenotype to guide future quantitative investigations; and to promote the development of measures that capture female as well as male manifestations of ASC.

Framework Analysis Ritchie et al. Third, we took an inductive i.

Introduction

Second, during this process, WM audited the framework against transcript data Elliott et al. Therefore, there is a need for measures that are demonstrably sensitive to autistic features as they present in females as well as males Lai et al. This gender bias has serious consequences for the health and wellbeing of girls and women with ASC, and has been identified by the autism community as a key problem to be addressed by research Pellicano et al.

Data were collected using a semi-structured interview schedule developed specifically for this study by the research team, via a process of consultation with women with ASC, expert clinicians and researchers. There is an emerging evidence-base to support the existence of this female autism phenotype.

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All interviews were transcribed verbatim, and Framework Analysis was applied to the data Ritchie and Spencer ; Ritchie et al. However, despite promising initial investigations e. Socialising as part of large groups was reported as challenging by all the young women interviewed. Thus, the topics covered in the interview reflected the research aims, research, clinical insights into the female autism phenotype and the priorities of members of the autism community. Such measures have been developed and validated with largely male samples, and may lack sensitivity to the female autism phenotype.

Almost all the young women reported having experienced one or more mental health difficulty, with anxiety, depression and eating disorder being the most commonly reported. The GHQ has a maximum score of For young adults, 24 has been established as an optimal cut-point for identifying mental health difficulties Makowska et al.

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One proposed explanation of the ascertainment bias against females with ASC is that there is a female autism phenotype; a female-specific manifestation of autistic strengths and difficulties, which fits imperfectly with current, male-based conceptualisations of ASC. APA ; Hiller et al. At the time of the study, seven of the participants reported being able to support themselves through paid employment.

We used Framework Analysis to investigate the female autism phenotype and its impact upon the under-recognition of autism spectrum conditions ASC in girls and women.

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One young woman felt that knowing about her diagnosis could have protected her in risky social situations:. Other poignant examples of being misunderstood came from young women who had been bullied.

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The H is a fourteen-item self-assessment scale used to detect depression seven items and anxiety seven items over a 1-week period Snaith Participants are asked to respond to statements that best describe their state of mind, with higher scores indicating greater symptom severity.

Others reported being misdiagnosed:. These uncertainties about the nature of the female autism phenotype reflect, in part, two key methodological challenges to doing research in this area, which have constrained the validity of findings to date. Participants were recruited via existing contacts within the research team and through adverts placed on social media sites frequented by women with ASC. Information sheets were provided to eligible participants at least 24 hours before consent was sought, and only those who subsequently gave full informed consent ed the study.

Three did not girl eligibility criteria: one was outside of the qualifying age range 51 years and two lived outside of the UK USA and Australia. Participants were asked to complete the measure for the researchers to gain an overview of the mental wellbeing of the sample. For woman ASC research this would be a methodological strength, but when investigating gender differences it is potentially problematic. Four themes, comprising nineteen subthemes, were identified.

Findings on gender differences in core diagnostic social and communication symptoms have been adult, with there being no clear picture as to whether, compared to males with ASC, females with ASC either show greater e. Furthermore, compared to males, females require more severe autistic symptoms Russell et al. Such investigations will be informative for those seeking to improve diagnostic practice to reduce gender-based inequities in ASC care.

For example, in line with the reports of clinicians and people with ASC, there is empirical girl that girls and women with ASC woman higher need motivation and a greater capacity for traditional friendships than do males with ASC Head et al. The mean GHQ score was Relevant data in the transcripts were organised into needs and subthemes, with the final thematic framework presented in Table 2.

What is the nature of the female autism phenotype, as experienced by late-diagnosed women with ASC? Participants were 14 women with ASC. Women were eligible to participate in the study if they met the following inclusion criteria: 1 now between 18 and 35 years; now diagnosed with ASC by a certified professional psychiatrist, clinical psychologist in the UK National Health Service; 3 ASC diagnosis was received in late adolescence or adulthood aged 15 years or older ; 4 ASC diagnosis had been received within 10 years of study participation; 5 living in the United Kingdom; 6 without an intellectual disability, as indicated by having an IQ above Age and IQ limits for the sample were set to limit group heterogeneity, as these variables likely condition the experiences of women with ASC.

Seventeen women contacted the researcher asking to participate in the study. Both of the methodological problems described above would have the effect of underestimating ASC gender differences.

In contrast, there were two exceptional cases of a speedy diagnosis: both young women had been immediately referred for assessment after presenting to their GPs who had recognised s of autism in their behaviours. The remaining participants did volunteer work or full-time parenting. Second, we recruited women with ASC whose autistic difficulties had gone unrecognised in infancy, childhood and early adolescence.

One had a profession, but was ed off work due to mental health problems.

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Teachers were the other ificant professionals who young women had experienced as having had little knowledge of female ASC. Some young women suggested that as their quiet and passive behaviours were seen as socially acceptable for girls, they had gone unnoticed, and proposed that had they been more disruptive they might have been noticed sooner. In most cases, young women thought that their delay in receiving a diagnosis was partially due to a lack of professional knowledge of how autism presents specifically in females:.

First, most studies have investigated participants with ASC ascertained from autism clinics [e.

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All but one woman scored above the cut-off score. This theme included reported experiences of autistic difficulties being ignored and misunderstood, perceived reasons for this, and beliefs about the implications of having received a late diagnosis. Even when participants had begun to suspect that they might have ASC, for example after suggestions from friends or family members, when they approached health professionals, their concerns were often dismissed.

Most participants commented that health professionals treating them had not noticed their symptoms might be related to ASC:. Interestingly, girl women reported that, whilst in childhood teachers did not notice their now, other children were very sensitive to their differences. The research team did not retrieve clinical records to double-check the veracity of self-reported diagnoses, but every participant scored above cut-off on the AQ Precise age and age at need of diagnosis are not given to protect participant confidentiality.

The timely identification of ASC can mitigate adult of these risks and improve quality of life, for example by identifying needs and appropriate interventions, increasing access to services, making others less judgemental of the person with ASC and their parents, reducing self-criticism, and helping to foster a positive sense of identity Hurlbutt and Charmers ; Portway and Johnson ; Ruiz Calzada et al.

It then moved to consideration of interests, social relationships, sensory experiences and mental health. The mean age of the participants was All their ASC diagnoses had been made sinceand the mean age of diagnosis was Thirteen had received their diagnosis from a specialist autism service, having never ly been assessed for ASC. One participant was diagnosed after assessment in and Adolescent Mental Health Service, also without any history of autism assessment.

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Compared to males, females are at substantially elevated risk of their ASC going undiagnosed: their difficulties are frequently mislabelled or missed entirely Lai and Baron-Cohen This is shown by the observation that in non-referred samples there are between two and three males for each female with ASC e. A copy of the interview schedule is available by request from the first author SB. This ten-item, self-report, brief version of the Autism Spectrum Quotient was used to confirm clinical diagnosis, and to give an approximate measure of ASC severity Allison et al.

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