853442

research-article2019
AUT0010.1177/1362361319853442AutismLeedham et al.

Original Article

Autism

‘I was exhausted trying to figure it out’: 2020, Vol. 24(1) 135­–146

© The Author(s) 2019
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DOI: 10.1177/1362361319853442
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an autism diagnosis in middle to journals.sagepub.com/home/aut

late adulthood

Alexandra Leedham1,2 , Andrew R Thompson1 , Richard Smith2

and Megan Freeth1

Abstract
Females often receive autism spectrum condition diagnoses later than males, leaving needs misunderstood. This study
aimed to explore the lived experiences of female adults diagnosed with an autism spectrum condition in middle to late
adulthood. Eleven autistic females diagnosed over the age of 40 years completed semi-structured interviews, analysed
using Interpretative Phenomenological Analysis. Four superordinate themes emerged: A hidden condition (pretending
to be normal and fitting in; mental health and mislabelling), The process of acceptance (initial reactions and search
for understanding; re-living life through a new lens), The impact of others post-diagnosis (initial reactions; stereotyped
assumptions), and A new identity on the autism spectrum (negotiating relationships, connections and community; changing
well-being and views of the self; the meaning of diagnosis). Findings highlight several factors not previously identified
that affect late diagnosis in females, including widespread limited understandings of others. Diagnosis was experienced
by several participants as facilitating transition from being self-critical to self-compassionate, coupled with an increased
sense of agency. Participants experienced a change in identity that enabled greater acceptance and understanding of the
self. However, this was painful to adjust to at such a late stage.

Keywords
autism diagnosis, autistic female, Interpretative Phenomenological Analysis, middle to late adulthood

Introduction older females. Hence, their experiences and needs are not
currently well understood.
Receiving a diagnosis on the autism spectrum is an impor- There is strong evidence that the experience of being
tant milestone in an individual’s life. However, the diag- autistic differs between males and females (Gould, 2017;
nostic process can be experienced as challenging and Lai & Baron-Cohen, 2015). Approximately three times
arduous (Crane et al., 2018). A recent survey indicated that more males than females are currently diagnosed (Loomes,
less than half of the adults receiving an autism diagnosis in Hull, & Mandy, 2017). It has been suggested that there is
the United Kingdom were either ‘very’ or ‘quite’ satisfied potential for females to be underdiagnosed based on tradi-
with the process (Jones, Goddard, Hill, Henry, & Crane, tional assessments (Knickmeyer, Wheelwright, & Baron-
2014). Diagnosis typically occurs later for females com- Cohen, 2008; Rynkiewicz et al., 2016). It is problematic
pared to males, particularly for females who are of average
to above average intellectual ability (Begeer et al., 2013;
1University of Sheffield, UK
Siklos & Kerns, 2007). Understanding gender differences 2Chesterfield Royal Hospital NHS Foundation Trust, UK
and lifespan issues have been identified as priority areas 3Sheffield Health and Social Care NHS Foundation Trust, UK
for research by autistic adults (Pellicano, Dinsmore, &
Charman, 2014). Work on understanding the experience of Corresponding author:
Megan Freeth, Sheffield Autism Research Lab, Psychology Department,
being autistic has been emerging in recent years (see University of Sheffield, Cathedral Court, 1 Vicar Lane, Sheffield S1
DePape & Lindsay, 2016 for a review) though to date, 2LT, UK.
there has been little research that specifically focuses on Email: [email protected]
136 Autism 24(1)

that knowledge and conceptualisations of autism spectrum demonstrating the largest difference in mean severity
conditions (ASC) are largely derived from male samples between males and females. The prevalence of these issues
(Gould & Ashton-Smith, 2011; Kreiser & White, 2014; is concerning and indicates that, currently, autistic women
Mandy et al., 2012) and there is emerging evidence that feel misunderstood. Bargiela et al. (2016) investigated the
females are more likely to ‘internalise’ their difficulties, experiences of adult females diagnosed between 19 and
presenting as anxious, passive, depressed or with eating 30, noting that late-diagnosed women tend to express ele-
difficulties (Attwood, 2007; Mandy et al., 2012). ments of the female autism phenotype that are under-rep-
Furthermore, females often use compensatory strategies to resented in samples of those identified in a timely fashion,
‘mask’ or ‘camouflage’ their difficulties (Hull et al., 2017; thus providing insight into how such characteristics led
Tierney, Burns, & Kilbey, 2016), allowing them to ‘blend them to being missed by clinical services earlier in life.
in’ to social situations with hypothesised functions includ- The females in Bargiela et al.’s (2016) study described
ing aiming to reduce shame or bullying and attempting to misunderstood needs and ongoing mental health difficul-
cope with the social world (Bargiela, Steward, & Mandy, ties and findings suggested camouflaging behaviours,
2016). This can take significant cognitive and emotional internalising and stereotyped understandings influencing
effort and impact negatively on mental health (Bargiela later diagnosis. However, to date, no qualitative interview
et al., 2016) particularly if camouflaging is engaged in studies have specifically focused on the experiences of
across multiple contexts or if an individual is engaged in females receiving their diagnosis in middle to late adult-
switching between camouflaging in some contexts but not hood. Given what is known about the likelihood that
in others (Cage & Troxell-Whitman, 2019). Thus, based females’ needs are under recognised (Gould, 2017) and
on historical understandings of ASC, the needs of females their support needs often misunderstood and misattributed
are often difficult to recognise and may appear subtle, or to different diagnoses (Attwood, 2007; Eaton, 2018), a
not prototypically autistic, to general practitioner (GPs) comprehensive understanding of the experience of older
and educators who are responsible for referring individu- autistic females is needed. Thus, the goal of the current
als for assessment. study is to better understand the lived experience of autis-
Despite recent increased interest in reporting the experi- tic females who receive a diagnosis in middle to late
ence of autistic adults, to date there has been very little adulthood.
research specifically on aging and autism (Happé &
Charlton, 2012). Of the research that has focused on middle
to late adulthood, studies have included adult participants Method
who received a diagnosis in childhood or early adulthood
Methodological approach
(e.g. Griffith, Totsika, Nash, & Hastings, 2011), have
mostly focused on males (Elichaoff, 2015; Hickey, This study employed a qualitative design, using
Crabtree, & Stott, 2018; Punshon, Skirrow, & Murphy, Interpretative Phenomenological Analysis (IPA) with
2009) or have not discussed gender as a factor (Lewis, semi-structured interviews. IPA studies enable focus on
2016). Thus, there remains a scarcity of research that inves- subjective accounts of specific lived experiences of the
tigates the specific experiences of adult females, especially individual, and how individuals respond to and interpret
those in middle and later adulthood. In adult ASC diagnos- these experiences (e.g. Macleod, Shepherd, & Thompson,
tic services, the gender ratio is lower (approximately two 2016; Pietkiewicz & Smith, 2014; Smith, Flowers, &
males to one female) than in child services up to 11 years Larkin, 2009). Data are analysed via an in-depth iterative
(approximately five males to one female) suggesting that process where the researcher engages in a ‘double herme-
females tend to be missed earlier in life (Rutherford et al., neutic’ process, making sense of how individuals make
2016). Therefore, focusing research on older females will sense of their world. The analytic process is designed to
likely lead to improved understanding of a more represent- give a voice to individual participants, by providing an
ative sample of autistic females than observed in research interpretative account of their experiences in their unique
solely investigating younger age groups. context (Larkin & Thompson, 2012; Larkin, Watts, &
Two recent studies have begun to address the gap in Clifton, 2006; Smith et al., 2009). Ethical approval was
understanding of the adult female experience of diagnosis. obtained via the Integrated Research Application System
An online study by Lewis (2017) demonstrated that (IRAS, 218102) and from Sheffield Health and Social
females receiving a diagnosis of ASC in adulthood reported Care NHS Foundation Trust for governance.
significantly more severe barriers to diagnosis than males.
The nature of barriers experienced were broad ranging
Participants
with ‘concern that I will be evaluated but will not be diag-
nosed with ASD because of my gender’, ‘difficulty finding Participants were 11 female adults who had received an
an ASD specialist who also specializes in my gender’ and ASC diagnosis at or over the age of 40 years. Recruitment
‘concern that I will be told I am ‘making up’ symptoms’ was via a local NHS diagnostic service. Participants were
Leedham et al. 137

Table 1. Participant demographics.

Participant Age Age at diagnosis Diagnosis Additional current diagnoses Preferred terminology
1 50 45 ASa ADHDb Asperger’s
2 43 40 ASDc ADHD Autistic
Dyslexia
3 53 50 HFAd Dyslexia Not known
4 43 40 HFA Epilepsy Autistic
5 47 40 AS None Autistic
6 51 48 AS PTSDe Aspie
ASC
7 64 62 HFA Learning difficulties Autistic/Asperger’s
OTSf
8 53 48 AS Dyspraxia OTS
9 60 51 AS ADHD OTS
10 44 44 ASD None Asperger’s
11 51 49 ASD Depression Autism
aAsperger Syndrome, diagnostic description based on previous diagnostic criteria.
bAttention deficit hyperactivity disorder.
cAutism spectrum disorder.
dHigh functioning autism, a term used within the clinical service to describe level of cognitive ability.
ePost traumatic stress disorder.
fOn the spectrum.

Table 2. Interview schedule.

Question number Question wording

1. What was the exact diagnosis you were given?
2. What was your experience of receiving the diagnosis? Can you tell me about that day?
3. How were you with the diagnosis of (insert name the participant uses) in the first 3 weeks after you had
received it?
4. Since that first few weeks, has anything changed?
5. How has receiving the diagnosis affected your life in any other ways that we have not yet spoken about?
6. What does the diagnosis mean to you now?
7. Has receiving the diagnosis affected how you see yourself?
8. Has receiving the diagnosis of (insert name the participant uses) affected your relationships with other
people?
9. Is there anything else that you feel would be important for me to know about your experience of
receiving a diagnosis of (insert name the participant uses)

excluded from taking part in the study if they lacked capac- project and in line with methodological guidance (Larkin
ity to provide consent, were born male (i.e. individuals & Thompson, 2012; Smith et al., 2009). Previous research
were not included if they had transitioned from male to findings and interview questions from Punshon et al.
female), did not identify as female, and were unable to (2009) were used to support this development. The main
speak English. See Table 1 for demographic information. interview questions are listed in Table 2. Interviews lasted
between 35 and 95 min. The interview was recorded using
an encrypted digital audio recorder. Participants were
Procedure debriefed at the end of each interview.
Three autistic adults were consulted via the local NHS
diagnostic service when developing the interview sched-
Analysis
ule. The main adaptations based on these discussions
related to prompts to support understanding. Participants Following each interview, notes were made by the inter-
were interviewed in person by the first author. The inter- viewer to consider non-verbal interactions, emotions, and
view schedule was developed based on the aims of the personal thoughts as part of the researcher reflexivity
138 Autism 24(1)

Table 3. Emergent themes and sub-themes, including the number of participants mentioning each.

Theme Subtheme Frequency

A hidden condition Pretending to be ‘normal’ and fitting in 9
Mental health and mislabelling 9
The process of acceptance Initial reactions and search for understanding 11
Reliving life through a new lens 10
Grief and reflections on the past 11
Post diagnostic impact of others Initial reactions of others 11
Stereotyped assumptions 8
A new identity on the autism spectrum Negotiating relationships, connections and community 8
Changing wellbeing and views of the self 10
The meaning of diagnosis 10

process. These notes were referred to when undertaking some, ‘unsuccessful’ connections led to internalised beliefs
the analysis to ensure the results were drawn from the data that they were ‘wrong’, ‘broken’ or ‘bad’ (Alice, Olivia,
and to support transparency. The interviews were tran- Lily). This appeared to relate to a need for acceptance that
scribed verbatim. Transcripts were read alongside record- at times was so strong, some participants took on a persona
ings and initial ideas noted down ‘line by line’ on the that was ego dystonic in order to fit in:
transcript in the right hand margin. Notes focused on lin-
guistic processes, conceptual ideas and descriptive com- … it started at school and it went on to college as well … [I
ments made by participants. Next, tentative emerging wore] different clothes to everything that I wore at home … I
themes were noted in the left hand margin of each tran- hated this person that I put on. (Hannah)
script. Then, themes were grouped together with the use of
notes and conceptual maps, based on their characteristics Women had several motivations for disguising their true
and given initial codes for all transcripts. Data were ana- selves. These included attempts to develop relationships. For
lysed as a whole by exploring overlapping themes, con- others, the aim was to blend in and not appear ‘different’:
cepts, exceptions and clustering themes alongside theory
and literature. This continued until a list of overarching I never felt like I fitted in anywhere … other people just
‘superordinate’ and subthemes were developed. The con- seemed so – like their lives have always seemed much easier
tribution of participants to each theme was recorded. An … they’ve just seemed to do things without the whole thought
independent audit of each stage of the analytic process was process that I have to go through.(Ruby)
conducted on three of the transcripts by a peer to ensure a
high standard of rigour. Strategies were developed to try to cope in a social
world. Some appeared to be unconscious or less deliberate.
Others were practised with the aim of learning social rules
Results and appearing ‘normal’ when making comparative evalua-
Analysis of the data produced four superordinate themes, tions to people who appeared to be part of the social norm
along with sub-themes. These are specified in Table 3 and or ‘in-group’. These strategies were effortful and some-
discussed below. All participant names are pseudonyms times avoidance of social contact was reported as being a
used to maintain anonymity. Some quotes have been edited preferable strategy. For many, pre-diagnosis, hiding or
to support clarity for the reader and missing data are repre- mimicking served a survival function. However, the con-
sented by the use of ‘ … ’. Additional explanations of sequences of doing so were complex, with some feeling
points are included within ‘[ ]’. deeply unhappy and exhausted. In part, this was due to
many attempts not appearing successful, leaving partici-
pants feeling on the periphery despite considerable efforts.
Theme 1–a hidden condition
This superordinate theme considers the hidden nature of Mental health and mislabelling. Experiences of mental health
ASC in females, including attempts to make sense of difficulties were expressed and, for some, this was associ-
themselves in a world comprised of a myriad of ‘norms’ ated with complex family histories, trauma, struggling in
and expectations. school, and bullying. Participants often reported that their
experience was not understood by professionals. Lily
Pretending to be ‘normal’1 and fitting in. Efforts to ‘fit in’ described seeking support within mental health services
were influenced by several factors, including confusing leading to several diagnoses which did not explain her
social interaction attempts and perceived failures. For experiences. Failure to find an appropriate understanding
Leedham et al. 139

or formulation added to the sense of confusion. This moment for some, a realisation that diagnosis allowed
appeared to factor in her exhaustion with life, and attempts them to end the arduous search to understand how they
to end her life: experienced the world.
Some described conflicting feelings initially. One, of
[Clinician] would say ‘oh, you’ve got borderline personality relief and at times, ‘elation’ (Olivia). But also frustrations
disorder’ … I explained to him exactly why I wasn’t BPD … I about what this might mean for their sense of identity and
wasn’t getting any answers, I just stopped going. I just stopped the potential for diagnosis to be limiting forced them to
asking for help, I just stopped, you know, looking for answers. question themselves:
(Lily)
… I thought ‘am I just anything other than these symptoms?’
I was exhausted trying to figure it out … why things were so Um, that really upset me … I sort of started doubting my
different for me, and … by the time I had got to that diagnosis, ability to do my job. (Celia)
I was already half dead, I was already in a functioning
depressed state. (Lily)
For Elizabeth, one of the more difficult emotions was a
feeling of shame:
Participants described not only significant ongoing bat-
tles with their mental health, but this being entwined with … kind of ashamed of myself because I was like ‘oh, this isn’t
a battle to understand themselves. Within their descrip- a nice thing, because it’s happened at a late age’.
tions is an implied power imbalance where labels were
enforced upon them. When receiving (non-autistic) diag- Her description suggests a fear about what being diag-
noses, some described self-doubt, struggling to trust their nosed at her age might mean. This may be exacerbated by
own judgements even when they knew the suggested diag- the fact that being autistic was never something she had
noses did not adequately describe or help them: considered and seeking a diagnosis was instigated by oth-
ers. Thus, receiving a diagnosis required a significant shift
… got to a point where I was almost convinced that they
to a new way of thinking about who she now was.
wanted to be right and I’d actually buried some deep trauma
and I had no memory of it and I started questioning the whole
For many, the diagnosis created a springboard for learn-
– like everything. (Mia) ing and understanding with several participants describing
an active process of researching what autism meant for
As well as resulting in missed support opportunities and them:
misattributed blame, participants’ experiences likely
… I got to work … learning everything I could … reading
resulted in ongoing confusion about identity. Many
everything … I know everything there is now, ha, I read
appeared to have internalised unhelpful messages, leading everything. (Lily)
to a devalued sense of self and strongly helped beliefs of
being fundamentally ‘mental’ (Kate) ‘wrong’ (Alice, Lily’s description suggests a focused approach. For
Olivia, Celia) or ‘defective’ (Lily, Alice, Mia). Olivia, the process of understanding the diagnosis provided
her with a sense of purpose and possibly control over devel-
Theme 2–the process of acceptance oping a new understanding of herself in the world:
This superordinate theme describes participants making … it gave me a sense of purpose, it was … ‘that’s why I don’t
sense of their diagnosis, grieving and adjusting, alongside understand all of this, now I can go and research why I don’t
re-experiencing memories with a new understanding. understand that’. And there was that sense of something new
and something new to research.
Initial reactions and search for understanding. The experi-
ence of the diagnostic process was described. The assess- Alongside researching, some found connecting with
ments were often intensely emotional, ‘sad’ (Ruby) and others helped to develop their understanding. This included
even ‘harrowing’ (Olivia). Many experienced anxieties accessing groups with other autistic adults. For years, the
about the unexpected and fear that they may receive no understanding of the self had been limited and at times
further answers. For others, it was painful to re-experience negatively prescribed by others. Research and connections
emotions associated with past experiences. provided concrete information participants could relate to
Some had spent a long time considering what the out- and autonomy in this meaning making process.
come may be and their initial reactions acted as confirma-
tion about what they had been researching pre-diagnosis, Reliving life through a new lens. Several participants
providing a sense of relief, calm and validation. For some, described a process of looking back, reliving their lives
this was coupled with a sense of ‘vindication’ (Alice), that with a new perspective after diagnosis. For many, this hap-
experiences they were ashamed of could be explained. The pened almost instantly and for others, continued several
relief described across the data included a ‘eureka’ (Lily) years later. The metaphorical lens that participants had
140 Autism 24(1)

previously viewed their lives through had been coloured in … to think that’s how that child was treated. It’s really sad.
part by the fact that they did not understand their experi- (Ruby)
ences. Some participants described reliving past experi-
ences as a process that was somewhat out of the conscious Some described current feelings of ‘anger’ (Marie) that
awareness in a way that took them back to that time and their difficulties were not understood earlier. For Elizabeth,
magnified those memories: learning that others had suspected she was autistic, exacer-
bated this anger about what might have been with an ear-
… your life flashes before your eyes … thousands of memories lier understanding:
coming back, constantly of ‘oh, I remember when this
happened … that’s why I had a meltdown and couldn’t ‘[she said]‘I always kind of thought you might have autism’.
understand why’. (Alice) And I didn’t say to her, but I thought, so why didn’t you do
anything?
In the moment, a different understanding of themselves
had likely shaped participants’ reactions to those experi- Many participants felt that through learning and under-
ences and to how they thought of themselves in the social standing what autism meant for them, and through new expe-
world. To experience this and to describe it during the riences, they had moved overall to a place of self-acceptance.
interview was emotional for several participants: However, grief was a fluid and ever changing process includ-
ing many experiencing fluctuations in mood and periods of
It’s good … at least now I understand why I’ve felt the way I loss and fear about the lifelong nature of autism:
have a lot of the time and why I’ve been the way I am a lot of
the time as well. Sorry, it’s making me really emotional. (Ruby)
… you sort of realise that you’re stuck like this forever really,
so that’s a bit … It’s a bit overwhelming … I’m going to
Although these revelations in light of diagnosis felt struggle with things for the rest of my life, that’s hard. (Celia)
positive, both quotes suggest a sadness and pain associated
with not having these understandings earlier. With those,
these life experiences may have been more manageable Theme 3–the impact of others post-diagnosis
and provided answers to things that in the moment were
confusing and at times devastating. This superordinate theme explores participants’ interper-
For some participants, reliving the past allowed them to sonal experiences post-diagnosis and the impact on their
shape interpretations and of others in the present: lives in several settings.

… taking my daughter to clinics … I’d say, ‘I think it’s because Initial reactions of others. Some shared their diagnosis
of this’ and I’d explain round it and they’d be like, ‘wow, oh, immediately, while others were more cautious about
that’s really interesting and I think that you’re absolutely potential reactions. Some had positive experiences, lead-
right’. (Hannah) ing to a feeling of gratefulness about being finally accepted
for who they are. This included continuing to be treated as
For Hannah, reflecting on her childhood helped her to individuals by the important people in their lives. For oth-
express to professionals what her daughter (also autistic) ers, this highlighted a contrast to their earlier experiences:
may be experiencing. Hannah was experiencing an ongo-
ing battle for her needs to be recognised by certain ser- … blessed to have such lovely people around … care enough
vices. Feeling powerless, increasing the knowledge of about me not to be bothered by my weird quirks and funny
others allowed her to elicit some control over how her ways … It makes a change after years of bullying and being
daughter was interpreted and supported. penalised for being odd. (Merrell)

Grief and reflections on the past. Although the expression For some, an openness of important others to under-
of grief was unique to each participant, the experience stand what it meant for them to be autistic provided oppor-
included several common emotional elements. Many par- tunities to develop communication. For Celia, this allowed
ticipants explicitly referenced their experience post-diag- for positive relationship changes as her husband became
nosis including a grieving process. Most portrayed a sense more attuned to her needs:
of sadness for their pre-diagnosis self and the significant
struggles which may have been easier had their needs … he got really into researching it … it’s really improved our
been understood: relationship because he’s realised now that a lot of the
arguments we had were me misunderstanding what he’d said
… I felt really bad for myself as a child … blaming myself for and him misunderstanding how I’d reacted.
things … not being good enough … or being slow and not like
everybody else. (Hannah) In contrast, some participants found others being unsure
what to do with the information or feeling let down by
Leedham et al. 141

unhelpful and ‘patronising’ reactions (Olivia, Marie). normal person … [when I] appear sort of normal, that is
Mia’s ex partner’s approach had the potential to leave her because of the years of actual effort that I’ve put into it.
feeling self-conscious or that her behaviour somehow (Alice)
needed modifying to meet the societal ideal:
Several participants experienced tailored and helpful
… if he considered I was talking too much if we were with support, with many describing supportive adaptations at
other people he would like kick me to tell me to shut up … I work. However, some had continuing battles for these
just found it difficult. adaptations to be made. Others volunteered to offer train-
ing within their workplaces to add to knowledge.
For Ruby, she felt most supported and validated by oth- Some experienced the diagnosis limiting the options for
ers online, or by her work colleagues. However, she expe- support that was individualised as people made assumptions
rienced family members as dismissive with them not about how they fit into a label based category. At times, this
appearing to recognise the magnitude of what it meant to included a loss of mental health support. For Marie, this
receive the diagnosis: approach to supporting her in college felt oppressive and
narrow in its view of who she is as an individual:
… I just expected him [husband] to say something … or
realise how massive this was for me and he didn’t for ages, Just stop looking at that damn word; that damn word doesn’t
and about two weeks later I just said, ‘look, this is huge for me make me, me.
… to you I’m no different, but to me I’m completely different’.

Elizabeth received several helpful and positive reactions. Theme 4–a new identity on the autism
However, she described an ongoing fear of disclosing. Some spectrum
reactions highlighted the potential for invalidation, leading
her to be selective when seeking support: This superordinate theme describes participants navigat-
ing relationships and changing relationships, alongside an
… when I told my dad … he was … ‘You don’t have autism, ongoing process to understand how autism relates to who
you’re perfect. There’s nothing wrong with you’ … he thinks they are.
I’m his perfect little girl … who’s got nothing wrong with her,
so I can’t talk to him about if I’ve had a bad day. Negotiating relationships, connections and community. Many
participants described ongoing changes in relationships
The narrative, of being ‘perfect’ suggests a neurotypical post-diagnosis. Some included familial relationships and
ideal with the implied opposite being ‘imperfect’ and old friendships evolving supportively in light of new
autistic. It is possible that this message contributed to the understandings:
difficulty Elizabeth described with integrating autism as a
part of her identity and fear of judgement. … he’ll [husband] now take the lead in situations where he
knows I’m not comfortable, whereas before he just thought I
Stereotyped assumptions. For many, the aforementioned was being awkward. (Celia)
need to ‘mask’ or develop a persona changed post-diagno-
sis. However, some participants experienced inner con- Others made life-changing relational decisions.
flicts, wanting to show their true selves, but being fearful Previously stuck in a passive position based on others’
of reactions. For some, stereotyped assumptions about expectations of her as a woman, Lily took control and
ASC, likely based on pre-existing schema led to frustra- ended the relationship with her husband. Some had experi-
tions about meeting the expectations of others: ences where they recognised friendships that weren’t
supportive:
… it makes me a little bit cross, that they think I should fit into
some sort of stereotype. Sometimes I feel that I’m letting them … the implication … I was automatically wrong, because I
down because I don’t act how they think I should do! (Celia) had this Asperger’s thing … So that was unexpected, and I
had to walk away. (Alice)
Some transitioned from a psychological position of
seeking to hide their true selves to feeling invisible and dis- … one person that I talk in confidence to … and they treat me
missed, fighting for their true needs to be recognised (e.g. the same as everybody else. The people that have ignored me
in the benefits system). Some postulated that the amount of I don’t want to know. (Kate)
effort placed on previously camouflaging their behaviours
directly affected how they were viewed post-diagnosis: The ability to make these changes signified a newfound
confidence to live shaped by their values. It represented a
… anyone who’s got to middle age with undiagnosed autism parallel ‘letting go’ of an old life, pre-diagnosis, one where
has had to basically do Olympic level training in how to be a they no longer needed to assimilate to meet the social norm.
142 Autism 24(1)

Descriptions suggest an intrinsic need for belonging, Many were kinder to themselves, signifying a progres-
where participants found positives and validation in relat- sion from self-criticism to self-compassion:
ing to others and recognising strengths, many of whom
found friendships ‘offline’ difficult. For some, they found … to understand where those difficulties and stresses are
a shared value and identity, contrasting with past self- coming from makes a difference in terms of how I think about
beliefs, and at times devaluation by others: myself. (Mia)

I’ve never fitted in that jigsaw puzzle … [now]I fit somewhere, This extended to engaging in soothing, often practical
I belong somewhere with other people somewhere who are and enjoyable self-care activities, such as art, communi-
like me. Yes, it’s good. (Ruby) cating online, spa days, learning and gardening.

Conversely, Elizabeth, engaged in ongoing camouflag- The meaning of diagnosis. A minority of participants strug-
ing behaviours: gled to find overall value in the diagnosis while struggling
with acceptance. However, others described it meaning
I won’t always tell him [husband] that I don’t understand, to ‘everything’ (Lily, Ruby). Elaborations focused on new-
make it less embarrassing, but then obviously that makes found confidence to trust their own judgements, having a
things ten times worse … voice in society and recognising their contributions as
valid and important:
The description suggests a belief that accepting support
from others may mean accepting she is autistic, something … other people have been telling you for years you’re wrong;
she is not ready to do. In not doing so, she recognises this now I trust that gut instinct because I know that I’m a grown
contributing to relational difficulties. woman and I know who I am now. So, it’s more powerful.
(Lily)
Changing wellbeing and views of the self. Diagnosis and new
understandings provided many with the opportunity to let For some, the fact that their experiences could be
go of blame. Recognition that it was ok to be who they explained was a novel thing, having lived for so many
were rather than meet some idealised version of the self years searching for understanding:
was freeing:
… it means there is a logical reason for my irrational
I feel free, very much more free. (Lily) behaviour and I like that, I like there to be a reason for
everything … I can prepare myself better. (Celia)
Many described ongoing anxiety and depression.
However, others reported that adaptations they were able The understanding was of profound importance, allow-
to make in their life meant that they experienced much less ing several participants to make sense of a part of their
distress than previously: ‘identity’ (Hannah), one that identified part of who they
were and provided a ‘framework’ (Mia) for learning and
I don’t get as much anxiety as I used to … because I’ve got improving their wellbeing. This extended to feeling there
better understanding of – and because I understand it better was power, strength and pride in diagnosis. Many experi-
I’m actually able to deal with it better … So I build strategies enced a changing view of themselves in society, one that
around that really. (Merrell) was ‘different’ to some, but that difference was in fact neu-
rodiversity and something to celebrate. Alongside pride
Some, knowing mental health difficulties were still a fluc- participants felt in being individuals, some also recognised
tuating part of their lives, described finding ways to proac- the resilience they had drawn from to overcome so much
tively develop ‘coping mechanisms’ (Alice, Celia) to reduce pre-diagnosis, a strength that they felt able to capitalise on
the likelihood of becoming overwhelmed, experiencing ele- with the support of diagnosis:
vated anxiety or ‘going into crisis’ (Lily). This included
managing social situations by doing the things that they … I’ve overcome so many things in my life, because of my
could cope with and letting go of associated guilt. inner strength … now I feel even more powerful now that I’ve
Descriptions suggest a newfound permission for participants got my diagnosis to back me up and to push me along to be
to meet their own needs and a developing identity as some- even stronger still. (Ruby)
one who no longer needed to conform to be acceptable:
Discussion
I feel a lot better about myself … I can be happier being
myself, rather than trying to fix myself and change myself and This study aimed to investigate the lived experiences of
fit in. (Ruby) females being diagnosed autistic in middle to late
Leedham et al. 143

adulthood using a qualitative interview methodology, IPA. making process, as seen in previous findings (Baldwin &
The analysis revealed four superordinate themes: A hidden Costley, 2016). The current study provides more insight
condition, The process of acceptance, The impact of others into this process. For many, this was the initial step in
post-diagnosis, and A new identity on the autism spectrum. regaining control of self-understanding.
The themes are discussed below to consider how the cur- Many participants reflected back on their life, both dur-
rent study relates to and extends existing knowledge. ing assessment and post-diagnosis, as reported in previous
Consistent with previous theorising, many participants literature (Hickey et al., 2018). It was painful to interpret
referred to ‘camouflaging’ their characteristics (Bargiela life experiences in a new light, one where they were not to
et al., 2016; Hull et al., 2017). This was motivated by a blame. For some, this included fear about the reality of
desire to ‘fit in’, to navigate social relationships and to ASC diagnosis. However, for many, expression of grief
behave as they ‘should’ by societal standards. These related to the intense pain for all they had previously
attempts to cope often exacerbated difficulties with mental endured, leading to ‘loss’ of a life where they were under-
health, consistent with previous literature (Cage, Monaco, stood by themselves and others. Thus, increasing self-
& Newell, 2017). In the current study, the need for accept- acceptance highlighted the sense of pain of what they had
ance into the social ‘in-group’ pre-diagnosis was evident. endured. Some found this grief complicated to process,
Awareness of remaining on the periphery despite signifi- leaving them ‘stuck’ in a place of despair about how things
cant effort was intensely distressing. Consequently, sev- could have been different.
eral women developed an internalised view that they were Many participants experienced supportive reactions and
intrinsically flawed. adaptations post-diagnosis. The study highlighted the
Mental health difficulties were present across the data, importance of reactions that were validating and provided
with many still specifically experiencing anxiety and low opportunities for relationship development. Post-diagnosis,
mood post-diagnosis. Some had been frequently misla- some participants recognised that camouflaging had unin-
belled and misdiagnosed, consistent with previous find- tentional consequences, with females being able to function
ings (Bargiela et al., 2016; Eaton, 2018). For some, mental ‘successfully’ in certain situations, leading to ongoing
health struggles included past suicide attempts and self- unrecognised needs, as seen in findings by Tint and Weiss
harm. One influence on declining mental health pre-diag- (2017). In addition, previously held schemas of others about
nosis was the lack of agency women had in understanding ASC potentially contributed to difficulties, including lost
themselves, something these women had lived with for benefits and battles for support. This appears to be specific
many years. This extends the current literature by high- to the experience of females, with their presentation not fit-
lighting that misdiagnosis and mislabelling was not only ting previously male conceptualisations of ASC. Stereotyped
about a lack of understanding of autistic females across understandings of ASC will likely increase the likelihood
services, rather it also related to power issues where others that females will not be referred for diagnoses in childhood
made overarching statements about who participants were. (Dworzynski, Ronald, Bolton, & Happé, 2012). A further
Female struggles with empowerment are evident in many problem caused by others’ misunderstandings and use of
domains and societal dimensions (Ballon & Yalonetzky, stereotypes, as highlighted by Treweek, Wood, Martin, and
2018). In the current study, it was evident that participants Freeth (2019), is that this leads to negative consequences for
experienced feelings of disempowerment while trying to autistic individuals, such as prejudiced behaviour and bully-
understand themselves in a confusing world that exacer- ing. Given the amount of emotional distress experienced by
bated self-doubt, shame and negative self-image. The issue women, this study emphasises the importance of developing
of power imbalance between healthcare professionals and an understanding of ASC in females across educational,
patients and service users hinders shared decision making governmental and employment settings to reduce the likeli-
in clinical settings (Joseph-Williams, Edwards, & Elwyn, hood of women enduring the same.
2014). It is also an issue that can emerge between partici- Previous findings suggest those viewing ASC as a form
pants and researchers (Kitchin, 2000). One way to reduce of ‘neurodiversity’ positively relate it to the self (Kapp,
the effects is for individuals to be involved in the develop- Gillespie-Lynch, Sherman, & Hutman, 2013). Thus,
ment of research and services via a participatory model unhelpful narratives experienced by two participants post-
(Fletcher-Watson et al., 2019), thus the balance of power diagnosis may have partly influenced difficulties they
can be shifted more towards a needs based model of experienced integrating diagnosis into their identity.
research and service provision. Diagnosis in middle to late adulthood likely also shaped
Several participants expressed relief post-diagnosis. this experience. Participants had experienced many sig-
For some, this included a sense of ‘vindication’ reducing nificant life-stages without a diagnosis. For several
long-standing shame associated with social misunder- women, the prospect of a ‘new life’ at this age was psycho-
standings. Others feared what diagnosis may mean for logically daunting to contemplate.
them, particularly at this stage of life. For many, diagnosis Participants described changing relationships post-
gave women the opportunity to commence a meaning diagnosis. Some found comfort in identifying with others
144 Autism 24(1)

within the female autism community, suggesting, for sample, some individuals were recently diagnosed and oth-
some, a pull for relating and group membership. Previous ers were diagnosed up to 9 years previously, hence time
findings indicate a sense of belonging to be of value to since diagnosis could have had an impact on the nature of
autistic women (Bargiela et al., 2016). Some still found responses. Future research may wish to consider experi-
social experiences difficult, but many found ways to navi- ences at additional time points post-diagnosis in order to
gate relationships, letting go of guilt associated with meet- understand the progression of adjustment experiences. It
ing their own needs. Several participants found power in was clear from the interviews that participants in the cur-
diagnosis, relinquishing the need to assimilate to the soci- rent study did not feel that their needs had been met by
etal norm, allowing them more choice in the trajectory of services, and this had resulted in negative consequences. It
relationships. For many, this process took time. However, is important that future research establishes how services
for several women, the diagnosis provided a sense of per- should be improved and where the gaps in knowledge are
mission to develop an identity where they were acceptable of individuals who work in these services in order that the
as they were. This study extends previous understandings needs of autistic adults are met. We anticipate that a partici-
about what diagnosis can mean to individuals. For many, patory approach (Fletcher-Watson et al., 2019) would be
this signified transitions to a place of self-compassion optimal in order that services can be tested on, and improved
which was proactively nurtured by engaging in activities in relation to, the factors that are most important to autistic
consistent with their needs. Some also experienced a sense individuals. Here, we considered the experiences solely of
of pride in being an autistic female, emphasised by new- women who received a diagnosis on the autism spectrum in
found beliefs that being ‘different’ was acceptable. middle to late adulthood who were able to engage in a spo-
The themes that emerged from this work dovetail with ken face-to-face semi-structured interview. This decision
some themes that have emerged from other recent work was to ensure a degree of homogeneity in our sample, as is
aiming to better understand the experience of adulthood required for IPA studies. However, it will also be important
for autistic individuals. For example, the extent to which to consider the experiences of less cognitively able indi-
autism is a hidden condition clearly fits with discussion of viduals, by using more flexible methodologies, and other
intentional camouflaging of symptoms in females (Cage & genders in order that their experiences can also be under-
Troxell-Whitman, 2019; Hull et al., 2017; Tierney et al., stood. This is particularly important as being diagnosed in
2016). The process of acceptance that the participants in middle to late adulthood is becoming increasingly com-
the current study were going through echoed some experi- mon, but this age group is currently very under-represented
ences reported by autistic adult females by Milner, in terms of the published autism research literature.
McIntosh, Colvert, and Happé (2019). The themes of Implications for clinical practice of the present study
interpretation of self and self-identity were also described should be considered. While a minority of participants in
by a much broader group of autistic adults reported by Tan the current study were struggling to find value in their
(2018). Further, participants in the Tan (2018) study also diagnosis, others described it as meaning ‘everything’
discussed the benefits of finding a new community which indicating the importance of receiving an autism diagnosis
was along similar lines to the points made by participants for many, even though they had already lived so many of
in the current study on finding a new identity on the autism their adult years without being diagnosed autistic. There
spectrum. Finally, discussions around the impact of others were many participant reports on experiences of not being
and struggling with the stereotyped assumptions that were understood by professionals and the negative conse-
often made, was aligned with the findings of Treweek quences of power imbalances, with the perception being
et al. (2019) who observed that autistic adults felt that mis- that this was one factor that had contributed to declining
understanding of autism by others had negative effects and mental health. It is therefore vital that clinicians possess a
consequences for them as individuals. broad, comprehensive and up to date knowledge of autism
It is important to recognise that IPA studies have some in order to effectively and flexibly conduct diagnostic
inherent differences to other methodologies. IPA studies assessments and minimise the possibility of mislabelling,
do not seek to be produce generalizable results, rather which can have severe and enduring consequences. It is
findings from IPA studies are deemed to have potential rel- important that clinicians do not over rely on the reports of
evance to other similar contexts as judged by the reader others when considering whether a diagnosis is appropri-
(Larkin & Thompson, 2012). Now that this study has pro- ate, as the participants here reported a high degree of cam-
duced detailed themes, further research would be required ouflaging, even with very close family members. It will be
to examine the extent to which these might be generaliza- important that clinicians engage individuals in discussion
ble. A survey-type study, potentially administered online, with regards to disclosure as it was clear from this study
using a combination of quantitative and qualitative ques- that there are a range of possible consequences to consider.
tioning could be one approach to do this. Participants reported an ongoing battle for needs to be rec-
An important issue to be considered in the transferabil- ognised by certain services indicating their experience was
ity of the findings is consideration is that in the current that understanding of autism in professional services is
Leedham et al. 145

still relatively poor. The process of coming to terms with T. Grandin (Eds.), Asperger’s and girls (pp. 1–6). Arlington,
receiving an autism diagnosis happens over a long period TX: Future Horizons.
of time. The participants here tended to report experienc- Baldwin, S., & Costley, D. (2016). The experiences and needs of
ing grief and a sense of sadness for their pre-diagnostic female adults with high-functioning autism spectrum disor-
der. Autism, 20, 483–495.
self, hence ongoing support will likely be needed as people
Ballon, P., & Yalonetzky, G. (2018). Introduction to special
go through the process of coming to terms with being
section: Quantitative approaches to the measurement and
given an autism diagnosis. Clinicians should consider analysis of female empowerment and agency. The Journal
ways to support autistic women to foster self-compassion of Development Studies, 54, 1279–1283.
due to its value within the sample. Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences
of late-diagnosed women with autism spectrum conditions:
An investigation of the female autism phenotype. Journal of
Conclusion Autism and Developmental Disorders, 46, 3281–3294.
Findings suggest widespread limited understandings of Begeer, S., Mandell, D., Wijnker-Holmes, B., Venderbosch, S.,
ASC in females, which influenced late diagnosis in the cur- Rem, D., Stekelenburg, F., & Koot, H. M. (2013). Sex dif-
rent sample. They also highlight issues of power and con- ferences in the timing of identification among children and
adults with autism spectrum disorders. Journal of Autism
trol, where autistic females reported times pre-diagnosis of
and Developmental Disorders, 43, 1151–1156.
feeling powerless or experiencing power imbalances. Post-
Cage, E., Monaco, J., & Newell, V. (2017). Experiences of autism
diagnosis, participants overall had increased sense of acceptance and mental health in autistic adults. Journal of
agency, allowing them to take control of and make sense of Autism and Developmental Disorders, 48, 473–484.
their own experiences. Pre-diagnosis, participants reported Cage, E., & Troxell-Whitman, Z. (2019). Understanding the rea-
misplaced labels and misdiagnoses being enforced upon sons, contexts and costs of camouflaging for autistic adults.
them, contributing to ongoing battles with mental health, Journal of Autism and Developmental Disorders, 49, 1899–
identity and a devalued sense of self. For many, diagnosis 1911. doi:10.1007/s10803-018-03878-x
was an incredibly painful process as they re-experienced Crane, L., Batty, R., Adeyinka, H., Goddard, L., Henry, L. A., &
and grieved such a significant period of life. It is evident that Hill, E. L. (2018). Autism diagnosis in the United Kingdom:
diagnosis achieved in a timely manner would likely allevi- Perspectives of autistic adults, parents and profession-
als. Journal of Autism and Developmental Disorders, 48,
ate the distressing way life had been experienced by partici-
3761–3772.
pants in the current study. It is paramount that training for
DePape, A. M., & Lindsay, S. (2016). Lived experiences from
professionals in mental health services, schools and wider the perspective of individuals with autism spectrum dis-
agencies takes place to reduce the likelihood of unmet needs order: A qualitative meta-synthesis. Focus on Autism and
taking a significant toll on wellbeing in autistic women, and Other Developmental Disabilities, 31, 60–71.
this should be delivered, at least in part, by those with lived Dworzynski, K., Ronald, A., Bolton, P., & Happé, F. (2012).
experience. Results emphasise the value of understanding How different are girls and boys above and below the diag-
oneself within a diagnostic framework where needs and nostic threshold for autism spectrum disorders. Journal of
strengths can be assessed, nurtured and supported. the American Academy of Child & Adolescent Psychiatry,
51, 788–796.
Funding Eaton, J. (2018). A guide to mental health issues in girls and
young women on the autism spectrum: Diagnosis, interven-
The author(s) disclosed receipt of the following financial support
tion and family support. London, England: Jessica Kingsley
for the research, authorship, and/or publication of this article:
Publishers.
Sheffield Health and Social Care NHS Foundation Trust as part
Elichaoff, F. (2015). What’s it like being you? Growing old(er)
of DClinPsy training at The University of Sheffield, (Grant/
with autism spectrum conditions – A scoping study. The
Award Number:)
European Journal of Social and Behavioural Sciences, 13,
1851–1864.
ORCID iDs
Fletcher-Watson, S., Adams, J., Brook, K., Charman, T.,
Alexandra Leedham https://orcid.org/0000-0002-4739-4241 Crane, L., Cusack, J., & . . .Pellicano, E. (2019).
Andrew Thompson https://orcid.org/0000-0001-6788-7222 Making the future together: Shaping autism research
Megan Freeth https://orcid.org/0000-0003-0534-9095 through meaningful participation. Autism, 23, 943–953.
doi:10.1177/1362361318786721
Note Gould, J. (2017). Towards understanding the under-recognition
of girls and women on the autism spectrum. Autism, 21,
1. Use of the word ‘normal’ by some participants refers to 703–705.
‘neurotypical’ or non-autistic people Gould, J., & Ashton-Smith, J. (2011). Missed diagnosis or mis-
diagnosis? Girls and women on the autism spectrum. Good
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