Hiding in Plain Sight: Eating Disorders,Autism,and Diagnostic Overshadowing in Women

Abstract

Background:

Autism and elevated autistic traits are increasingly identified in eating disorder (ED) populations, although less research has focused on ED rates and risk factors in individuals who already have an autism diagnosis. This study aimed to investigate the timing and sequence of autism and ED diagnoses in women and examined associations between autistic traits, autism diagnosis, and risk of EDs and other mental health difficulties.

Method:

In this cross-sectional study, we recruited 371 cisgender autistic women (M_age = 34.38 years, SD = 10.54) and 394 cisgender non-autistic women (M_age = 33.49 years, SD = 10.40). We used the Autism Spectrum Quotient to measure autistic traits, the Eating Attitudes Test to assess ED risk, and the Depression, Anxiety, Stress Scale for broader mental health concerns. We used chi-square tests to establish the rate of overlap between autistic traits, autism diagnosis, and mental health risks and linear regression models to assess the unique impact of autistic traits and autism diagnosis on mental health symptom severity.

Results:

We found that 58% of women with high autistic traits (with and without an autism diagnosis) were at high risk of an ED (N = 174). While autistic traits predicted elevated ED risk overall, the effect was substantially lower in women with a formal autism diagnosis [b = −8.34, t(718) = −5.84, p < 0.001], suggesting a potential protective factor. This finding was particularly notable, as approximately one-third (N = 106, 28.6%) of diagnosed autistic women reported a history of EDs. Critically, however, in 75% of these cases, an ED diagnosis preceded an average delay of 13.86 years (SD = 9.76) before they were identified as autistic. Higher autistic traits were also associated with increased depression, anxiety, and stress symptoms, with less severe depression levels again found in women with a formal autism diagnosis [b = −1.70, t(718) = −3.27, p = 0.001].

Discussion:

Our findings underscore the urgent need for clinicians to screen women presenting with an ED for autism, as a formal diagnosis may improve their mental health-related outcomes. While we found that most autistic women were initially diagnosed with an ED and faced substantial delays before their autism was recognized, those diagnosed with autism first were 17 years old on average, indicating that their diagnoses were also delayed. Future research should therefore investigate differences in mental health outcomes in a broader range of autistic people, including gender-diverse individuals and those diagnosed in both childhood and adulthood.

Community Brief

Why is this an important issue?

Studies in people with eating disorders often find that many have high levels of autistic traits, and some have undiagnosed autism. This is important, because research has shown that standard eating disorder treatments can be a poor fit for autistic people, particularly if they do not recognize their individual support needs.

What was the purpose of this study?

This study looked at a large group of women who already have an autism diagnosis, who may or may not have had a previous eating disorder. The goal was to identify how old they were when they received each diagnosis and to understand whether having higher autistic traits or an autism diagnosis influenced whether they were at risk of developing an eating disorder or another mental health condition.

What did the researchers do?

We surveyed 371 autistic women (meaning women with a formal diagnosis) and 394 non-autistic women (meaning women who do not have a diagnosis and do not self-identify as autistic). We measured levels of autistic traits using the Autism Spectrum Quotient, their risk of developing an eating disorder using the Eating Attitudes Test, and signs of other mental health issues using the Depression, Anxiety, Stress Scale. We used the scores from these surveys to identify relationships between autistic traits, having an autism diagnosis, and risk of developing an eating disorder or other mental health concerns.

What were the results of the study?

Our study found that 28% of autistic women had experienced an eating disorder in the past. However, for most of these women (75%), their eating disorder was diagnosed on average, 14-years before they received their autism diagnosis. We also found a strong connection between autistic traits and eating disorders. Among women with a history of eating disorders, 49% showed high levels of autistic traits. Similarly, for women currently at high risk of developing an eating disorder, 58% showed high levels of autistic traits. Importantly, our study found that having a formal autism diagnosis might reduce the risk of certain mental health challenges. Women with a formal autism diagnosis had a lower risk of developing an eating disorder, and had less severe depression symptoms compared to women with high autistic traits but no formal autism diagnosis.

What do these findings add to what was already known?

This study found a higher rate of eating disorders and eating disorder symptoms in autistic women and women with high autistic traits than previous research had found. It also highlights that mental health professionals should consider screening women with an eating disorder for autism, as the vast majority will be undiagnosed when they develop an eating disorder.

What are potential weaknesses in the study?

One limitation is that most of the autistic women in our sample were diagnosed in their late teens or adulthood. Additionally, our study focused on cisgender women only, so the results do not reflect the experiences of gender-diverse people or people who self-identify as autistic.

How will these findings help autistic adults now or in the future?

Our study builds on what is already known about autism and eating disorders in women, by showing that the connection is stronger than previously thought. This may prompt mental health professionals to consider and screen for autism in women with an eating disorder in a more timely way, which could offer some protection against severe eating disorder and depression symptoms, and help to reduce the number of missed autism diagnoses in women.

Introduction

Autism is currently diagnosed at an approximate 3:1 male-to-female ratio, although mounting evidence suggests female prevalence rates may be higher.^1,2 Accurate estimates are confounded by gendered perceptions of autism as a “male condition,”^3,4 poor clinical awareness of diverse presentations of autism,^5–7 and the propensity for girls and women to be diagnosed later than their male counterparts across the lifespan.^8–10 In many cases, women are only identified as autistic while seeking or receiving care for seemingly unrelated mental health concerns.^11,12 This phenomenon is particularly clear in the context of eating disorders (EDs), as various reviews suggest that around 23% of women with an ED are subsequently diagnosed with autism, while many others display clinically significant autistic traits.^13–15 Important efforts to modify ED treatments to better meet the needs of autistic people are emerging,^16–18 although these developments overlook a striking reality: that autism is overwhelmingly identified as a secondary condition among women experiencing an ED. In this study, we seek to understand the timing and sequence of historical autism and ED diagnoses in women and identify whether autistic traits and having an autism diagnosis are associated with differences in mental health outcomes.

The sex-based disparity in autism prevalence rates is thought to result from a complex interplay of genetic and social factors. The influence of a proposed “female protective effect,” for example, suggests that females require greater familial risk factors to exhibit autistic traits at a level comparable with males,^19–21 although definitive causal or protective genes are yet to be identified.^22,23 The notion that widespread gender bias acts as a pervasive barrier to identification, by contrast, positions the male-to-female ratio as a consequence of sociostructural factors rather than evidence of definitive biological differences. Through this framing, the routine underdiagnosis of autistic girls and women is a likely by-product of historical depictions of autism as a narrow set of debilitating symptoms that occur almost exclusively in boys,^3,24 perpetuated by male bias in diagnostic criteria and clinical practice.^20,25 Some argue that key observers such as parents, teachers, and medical practitioners are influenced by these enduring stereotypes, which may reduce the likelihood that girls and women are referred for an autism assessment and increase the risk of concerns being misattributed to other sources, such as “behavioral issues” or mental health challenges.^11,22,26

Despite these frequent misattributions, autistic people are disproportionately impacted by mental health conditions. Between 55% and 70% experience at least one co-occurring mental health condition, with higher rates of depression, anxiety, and suicidality relative to the general population.^27–29 Delayed or missed autism diagnoses can further compound mental health risk in profound ways. Individuals who remain undiagnosed until adulthood often endure years of social isolation, bullying, and abuse, which significantly contribute to the development of mental health difficulties.^3,10,11 Furthermore, undiagnosed autistic individuals may internalize negative societal attitudes and misconceptions about their differences, leading to low self-esteem and a heightened risk of depression due to a lack of understanding and appropriate support.^6,7 When autism remains unrecognized, the utility and accessibility of standard treatment approaches are often compromised.^30,31 However, access to diagnosis can also provide a framework for self-understanding and accessing appropriate support, potentially mitigating some of the long-term mental health impacts of undiagnosed autism.^6,7

We propose that EDs inhabit a somewhat unique position in relation to autism and the issue of underdiagnosis among women. Despite evidence that men and gender-diverse people also experience EDs, they are often erroneously regarded as “female-specific disorders,”^32,33 which may reinforce a narrow understanding among clinicians and limit the investigation of dual or differential autism diagnosis in girls and women. Indeed, it is notable that most existing research on autism and EDs has focused on identifying autistic traits or undiagnosed autism within ED populations.^15,17,34 While there are early indications that late identification may be related to camouflaging or masking of autistic traits,³⁵ which is known to impact mental health outcomes among autistic people more broadly,^36,37 current evidence suggests that autistic women are overrepresented in all ED subtypes. Approximately 23% of individuals with anorexia nervosa,¹⁴ and to a lesser extent, bulimia nervosa, binge eating disorder (BED), and ED not otherwise specified,^38–40 are identified as autistic or displaying high autistic traits though often only through the course of their participation in research.^41–43

Just two prior studies have examined the incidence of EDs in known autistic populations, with estimates ranging from 6.8% to 20.0%.^21,44 Margari et al.⁴⁴ investigated co-occurring EDs in a sample of autistic girls (N = 59); however, the young age of their participants (M_age = 10.97, SD = 4.70) suggests that their findings may only reflect early-onset EDs, which are relatively rare compared with EDs in older individuals.^45,46 Similarly, while Zhang et al.⁴⁷ examined robust data from 3189 individuals (born 1977–2000) with current or previous anorexia nervosa, their stringent inclusion criteria likely also confound their estimates. The authors required that autistic individuals had received at least two independent autism diagnoses to be included in the analyses, which, given the numerous barriers to diagnosis experienced by women,^3,11 presents clear challenges to the representativeness of their sample and accuracy of their estimates. Despite these clear limitations in existing literature, understanding the relationship between autism and EDs remains of high importance. Emerging literature suggests that the presence of autistic traits is associated with poorer ED outcomes,^17,34,48,49 as complexity exists in disentangling overlapping features, such as differences in social and communication styles, a preference for predictability, sensory processing sensitivities, and selective eating habits,^50–54 and in modifying treatment settings and approaches to better meet the needs of autistic people and those with high autistic traits.^18,55,56

While the scarcity of studies examining EDs in autistic populations does little to address the delayed identification of autism in women with EDs, it is essential to note that late-diagnosed autistic individuals experience more severe mental health concerns both prior to receiving a diagnosis and in relation to peers who were identified in a timely way.⁵⁷ As such, it would be reductive to consider the frequency of latent autism diagnoses in ED cohorts in isolation, as this phenomenon suggests a broader issue: that the presence of an ED may act as a novel barrier that disrupts or delays the identification of autism in girls and women. We propose that a form of “diagnostic overshadowing” occurs in many cases. This is a term that has typically been applied to the identification of mental health conditions in individuals with an intellectual disability,⁵⁸ although in this instance it will be used specifically to refer to the culmination of gender biases in understandings of autism and EDs,^11,20,25 and the tendency of professionals to attribute autistic traits and characteristics in girls and women to other factors^11,22,26 may lead many health professionals to overlook a potential autism diagnosis in women experiencing an ED.

Aims and hypotheses

The aims of the present study were to establish the rate of EDs in a sample of adult autistic women; to investigate the timing and sequence of autism and ED diagnoses among women with both conditions; and to assess current mental health symptomology among autistic and non-autistic women. Specifically, we hypothesized (1) that autistic women would be more likely to receive an initial diagnosis of an ED rather than autism and (2) that autistic women would display higher levels of current mental health symptomology than non-autistic women.

Method

Participants

We recruited 765 cisgender women between the ages of 18 and 71 years (M_age = 33.93 years, SD = 10.47) through social media and online community groups (Table 1). Seventy-four cases were excluded as they did not identify as cisgender women (i.e., not assigned female sex at birth and not currently identifying as female gender, 5 assigned a sex other than female at birth, and 69 did not currently identify as female). The decision was made to exclude these individuals from the present study, not because their experience of diagnosis is less relevant but because we sought to minimize the complexity of our sample and simplify interpretation in this instance. The final sample contained 371 women with an autism diagnosis (M_age = 34.38 years, SD = 10.54) and 394 women without an autism diagnosis (M_age = 33.49 years, SD = 10.40). Participants primarily resided in Australia (36% autistic, 28% non-autistic), followed by the United States, the United Kingdom, and Canada (Table 1).

Table 1.

Participant Characteristics

	Diagnosed autistic women N = 371			Non-autistic women N = 394
	N (%)	M_age (SD)	Range	N (%)	M_age (SD)	Range
Age	371 (100%)	34.38 (10.54)	18–71 years	394 (100%)	33.49 (10.40)	18–71 years
Age at ED Dx	106 (29%)	18.50 (7.34)	5–48 years	161 (41%)	18.85 (6.27)	8–53 years
Age at Autism Dx	371 (100%)	29.27 (11.91)	2–70 years	—	—	—

	N	(%)	N	(%)
Autistic traits
High	342	(92%)	149	(38%)
Low	29	(8%)	245	(62%)
Prior ED diagnosis	106	(29%)	161	(41%)
ED subtypes
AN	28	(26%)	69	(43%)
BN	11	(10%)	16	(9%)
BED	12	(11%)	7	(4%)
EDNOS	10	(9%)	9	(6%)
Prefer not to say	45	(42%)	60	(36%)
Current ED risk
High	138	(37%)	177	(45%)
Low	232	(63%)	216	(55%)
Country of residence
Australia	133	(36%)	268	(68%)
United States	103	(28%)	68	(17%)
United Kingdom	70	(19%)	22	(6%)
Canada	19	(5%)	11	(3%)
Other	46	(12%)	25	(6%)
Sexual orientation
Heterosexual	185	(50%)	284	(72%)
Homosexual	29	(8%)	20	(5%)
Bisexual	83	(22%)	64	(16%)
Asexual	37	(10%)	15	(4%)
Other	36	(10%)	10	(3%)

Autistic traits (AQ total score): High (≥32), Low (≤31); ED risk (EAT-26 total score): High (≥20), Low (≤19).

AN: anorexia nervosa; BED: binge eating disorder; AQ: Autism Spectrum Quotient; BN: bulimia nervosa; EAT-26: Eating Attitudes Test; ED: eating disorder; EDNOS: eating disorder not otherwise specified.

Measures

The Autism Spectrum Quotient (AQ)⁵⁹ is a self-administered screening tool designed to measure autistic traits and characteristics in people older than 16 years, without a co-occurring intellectual disability. The AQ has 50 items, scored on a 4-point agree–disagree scale (definitely agree, slightly agree, slightly disagree, definitely disagree). It assesses five areas related to autism as follows: Social Skills, Attention Switching, Attention to Detail, Communication, and Imagination, with scores treated as both continuous (higher total AQ scores indicate increased autistic trait presentation; range 0–50) and categorical (threshold value of ≥32 distinguishing between “high autistic traits” and “low autistic traits”). This scoring threshold is demonstrated to correctly identify 80% of autistic individuals, with 2% of non-autistic individuals exceeding this value.^59,60 In the present sample, Cronbach’s alpha was used to assess the internal consistency of the AQ items, with subscales and the total score recording moderate-to-high Cronbach’s alpha values: Communication (0.85), Social Skills (0.77), Imagination (0.72), Attention to Detail (0.73), Attention Switching (0.67), and Total Score (0.93).

The Eating Attitudes Test (EAT-26)⁶¹ is a 26-item self-report measure designed to identify symptoms and characteristics of various EDs. Responses to EAT-26 questions produce scores on the following three criteria: (1) total cumulative score, (2) behavioral questions relating to eating symptoms and weight loss, and (3) body mass index score, derived from participant height and weight. The EAT-26 produces three subscales that reflect specific types of EDs and their associated behaviors: Dieting (restrictive dieting behaviors, preoccupation with weight, fear of weight gain, and sense of guilt after eating); Bulimia and Food Preoccupation (binge eating and/or purging behaviors and concern about food); and Oral Control (items related to control over food intake, self-control around food, and social pressure to eat). The EAT-26 produces both continuous scores (range 0–78), with higher values indicating elevated ED risk, and categorical scores, with scores of 20 or above considered to be in the clinical range. This threshold value has been demonstrated to correctly classify 83.6% of clinical ED cases.⁶¹ Cronbach’s alpha for EAT-26 subscales and total score was all high in the current sample: Dieting (0.91), Bulimia and Food Preoccupation (0.83), Oral Control (0.83), and Total Score (0.92).

The Depression Anxiety Stress Scale (DASS-21)⁶² is a 21-item self-report screening measure that assesses symptom severity in the following three domains: depression, anxiety, and stress. The DASS-21 is scored on a 4-point scale (never, sometimes, often, almost always), where participants indicate the degree to which each statement applied to them over the preceding week. Scores are both continuous, with higher DASS-21 total score reflecting greater symptom burden (range 0–63), and categorical, with participants grouped as “normal,” “mild,” “moderate,” “severe,” and “extremely severe” relative to the general population. The DASS-21 has previously been shown to have good discriminant validity in autistic populations,⁶³ with high internal consistency demonstrated by Cronbach’s alpha in the present study: depression (0.93), anxiety (0.88), and stress (0.90).

Procedure

Ethical approval was granted by the Human Research Ethics Committee of the governing university, in accordance with national statutes and law, ethical standards of the national research committee, and the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. Informed consent was obtained from all participants, and data collected were not reidentifiable. No monetary or other incentives were offered to participants. This study functioned as an online, self-report survey. Advertisements, which specified that was a study about autism and EDs, were placed on social media and online community groups and targeted autistic and non-autistic women older than 18. Demographic information and history of autism and ED diagnoses were first collected. Self-reported ED diagnoses were taken to reflect historical incidence rates, while autism diagnoses were taken as current, to reflect an enduring neurotype. Participants then completed the EAT-26 and DASS-21, which were used to measure the severity of ED symptoms and symptoms of depression, anxiety, and stress, respectively.

All participants also completed the AQ as a measure of autistic traits and were classified as displaying either “high autistic traits” or “low autistic traits,” in accordance with the AQ threshold value detailed above. We found that 92% (N = 342) of diagnosed autistic women displayed high autistic traits (i.e., AQ scores above ≥32), as did a considerable number of women with no autism diagnosis (38%, N = 149). As such, for the present study, a primary analytic approach was given to group-level differences by autism diagnosis status: diagnosed autistic women (N = 371, M_age = 34.38 years, SD = 10.54) and non-autistic women (N = 349, M_age = 33.49 years, SD = 10.40). A secondary approach to analysis was given to the influence of autistic traits, irrespective of a formal autism diagnosis. Data were classified in this way to establish two discrete groups for the purpose of comparison, as, given the focus of this research, it is valuable to use both formal diagnosis status and measures of autistic traits as proxies for identifying associations.

Statistical analyses

This cross-sectional study employed a general linear approach to analysis using IBM SPSS, version 29. Missing value analysis revealed a small amount of missing data on self-report measures (<2%, N = 1), with Little’s Missing Completely at Random (MCAR) test revealing these to be missing completely at random. This case was removed from subsequent analyses (autistic women, N = 371). Additionally, age of ED diagnosis was missing for six participants, although these cases were retained. Assumption testing revealed violations of normality of residuals in EAT-26 scores among both diagnosed autistic and non-autistic cohorts (Kolmogorov–Smirnov p < 0.05). Violations of homogeneity were also observed in EAT-26 scores (Levene’s test p < 0.05). To mitigate this, bootstrapping of 1000 samples was applied to all analyses to counter non-normality, with 95% confidence intervals (CI) estimated for effect sizes (Cohen’s d). To further reduce type 1 error rate, Bonferroni corrections were applied, with adjusted significance levels calculated and reported alongside results.

To evaluate hypothesis 1 that autistic women would be more likely to receive an initial diagnosis of an ED than autism, we first examined the rate of co-occurring EDs reported by diagnosed autistic women and then compared the age of diagnosis for each condition to ascertain whether diagnosed autistic women were more likely to receive an initial diagnosis of an ED or autism. A linear regression analysis was conducted to test if age of ED diagnosis predicted age of autism diagnosis. To test hypothesis 2 that autistic women would display higher levels of current mental health symptomology than non-autistic women, a chi-square test was used to identify the proportion of individuals displaying clinically significant symptoms relative to the general population. Multiple linear regression analyses were employed to identify the unique contribution of autistic traits and the presence or absence of an autism diagnosis on ED and other mental health risk.

Results

Participant characteristics

Participant characteristics are displayed in Table 1. Autistic women (N = 371) predominantly received their autism diagnosis in adulthood (M_age at autism diagnosis = 29.27, SD = 11.91, range = 2–70 years), with 92% of this cohort also displaying high autistic traits (AQ scores ≥32). An additional 38% of non-autistic women (i.e., those without a formal autism diagnosis) also showed high autistic traits.

Historical ED diagnoses were reported by 34.9% (N = 267) of the total sample. Within this subset, 39.7% (n = 106) had an autism diagnosis, while 49.1% (n = 131) had high autistic traits (i.e., autistic traits considered independently of an autism diagnosis). There were no significant differences in age at first ED diagnosis between autistic women (M_age at ED diagnosis = 18.50, SD = 7.34, range = 5–48 years) and non-autistic women (M_age at ED diagnosis = 18.85, SD = 6.27, range = 8–53 years; mean difference = −1.07; t = 1.15, p = 0.269, d = −0.16, 95% CI: −2.92, 0.78).

Current “high-risk” ED symptoms (EAT-26 scores ≥20) were observed in 39.1% (N = 298) of the total sample. Within this subgroup, 58.4% had high autistic traits (i.e., autistic traits considered independently of an autism diagnosis), although non-autistic women (i.e., women without an autism diagnosis) were more likely to be classified as displaying ED symptoms in the clinically significant range [χ²(1; N = 765) = 4.71, ϕ = −0.08, p = 0.018].

Table 2 illustrates patterns of correlations between study variables for autistic and non-autistic women. Significant, although small positive associations were observed within both groups, with Fisher’s r to Z transformation utilized to identify significant differences in the strength of association between autistic and non-autistic participants. We found significantly stronger positive associations between autistic traits and symptoms of depression, anxiety, and stress among non-autistic women. We also found more consistent associations between total ED risk and specific patterns of ED behaviors among non-autistic women.

Table 2.

Pearson’s Bivariate Correlations for Study Variables (autistic [upper panel] and non-autistic [lower panel] women)

	1	2	3	4	5	6	7	8
1. Autistic traits		0.26^*	0.26^*	0.13	0.17^*	0.14	0.17^*	0.18^*
2. ED risk	0.13		0.95^*	0.75^*	0.57^*	0.32^**	0.33^*	0.27^*
3. Dieting	0.10	0.97^*a		0.61^*	0.39^*	0.26^**	0.23^*	0.20^*
4. Bulimia and food preoccupation	0.11	0.83^*a	0.75^*a		0.16^*	0.27^**	0.31^*	0.26^*
5. Oral control	0.17	0.70^*a	0.57^*a	0.38^*a		0.24^**	0.32^*	0.21^*
6. Depression	0.38^*a	0.41^*	0.36^*	0.38^*	0.36^*		0.60^*	0.57^*
7. Anxiety	0.37^*a	0.40^*	0.34^*	0.37^*	0.35^*	0.65^*		0.75^*
8. Stress	0.42^*a	0.34^*	0.29^*	0.34^*	0.29^*	0.67^*	0.79^*

Autistic traits (AQ total score); ED risk (EAT-26 total score).

Significant Fisher’s Z test of correlations between autistic and non-autistic participants; Bonferroni-adjusted criteria p < 0.006.

*p < 0.006;**p < 0.001; two-tailed.

Diagnostic sequence

For women diagnosed with both autism and an ED (N = 106), most received their ED diagnosis first (N = 79, 74.5%). There was an average delay of 13.86 years (SD = 9.76) between receiving an ED diagnosis and subsequently being diagnosed with autism (M_age at autism diagnosis = 31.29, SD = 9.55, median = 30, range = 16–52 years); (M_age at ED diagnosis = 17.43, SD = 6.48, median = 16, range = 5–40 years).

Autism was diagnosed first for 17.0% (N = 18) of women with a history of both conditions. In these cases, autism was identified an average of 5.40 years (SD = 4.55) before they were diagnosed with an ED (M_age at autism diagnosis =17.65, SD = 10.13, median = 16, range: 2–46 years); (M_age at ED diagnosis =22.49, SD = 9.55, median = 20, range: 9–48 years). Two women (1.9%) were identified as autistic while they were diagnosed or receiving treatment for an ED (M_age at autism and ED diagnosis: M_age = 25.50, SD = 6.36).

Current symptom severity

ED risk

Given the high proportion of women with high autistic traits but no autism diagnosis in our sample, we sought to scrutinize this finding by undertaking a linear regression analysis to identify the unique contribution of both autistic traits and an autism diagnosis on current ED risk [R² = 0.08, F(3718) = 21.20, p < 0.001] while controlling for age effects (Table 3). We found that autistic traits were associated with a minor increase in ED risk (b = 0.34), while having an autism diagnosis was associated with significantly reduced ED risk (b = −8.34), when autistic traits were held constant.

Table 3.

Linear Regression Model for Eating Disorder Risk

	b	SE	β	sr ²	p	95% CI [LL, UL]
(Constant)	24.36	2.46			<0.001	[19.75, 29.25]
Autistic traits	0.34	0.07	0.23	0.03	<0.001	[0.20, 0.47]
Autism diagnosis	−8.34	1.41	−0.26	0.04	<0.001	[−11.28, −5.57]
Age	−0.32	0.05	−0.21	0.04	<0.001	[−0.43, −0.23]

DV: ED risk: EAT-26 total score; IVs: autistic traits: AQ total score; Autism Dx: 0 = no, 1 = yes; b: unstandardized regression weights; β: standardized regression weights; sr²: semipartial correlation squared; bootstrapped 1000 samples; Bonferroni-adjusted significance level (p ≤ 0.016).

SE: standard error; CI: confidence interval; LL: lower limit; UL: upper limit.

Depression, anxiety, and stress symptoms

On an initial examination of the severity of depression, anxiety, and stress symptoms among autistic and non-autistic women, we found significant differences in depression levels [χ²(4; N = 765) = 18.80, ϕ = 0.16, p < 0.001], with autistic women being overrepresented at moderate, severe, and extremely severe levels. There were also significant differences in anxiety [χ²(4; N = 765) = 22.73, ϕ = 0.18, p < 0.001], where autistic women also demonstrate a higher likelihood of experiencing moderate, severe, and extremely severe symptoms. Similarly, with stress severity levels, autistic women are more likely to experience elevated stress, with higher proportions of autistic women in the moderate, severe, and extremely severe ranges [χ²(4; N = 765) =21.30, ϕ = 0.17, p < 0.001].

Current depression, anxiety, and stress symptom severity

As previously detailed, to gain more nuanced insight into the large proportion of women with high autistic traits but no autism diagnosis in our sample, we then undertook a series of multiple linear regression analyses (Table 4). The overall regression models were significant for depression [R² = 0.12, F(3693) = 30.29, p < 0.001], anxiety [R² = 0.15, F(3693) = 40.04, p < 0.001], and stress [R² = 0.16, F(3693) = 44.98, p < 0.001]. In these analyses, autistic traits again predicted higher levels of symptoms of depression (b = 0.21), anxiety (b = 0.17), and stress (b = 0.19), while an autism diagnosis was only predictive of a significant reduction in depression symptoms (b = −1.70).

Table 4.

Linear Regression Models for Depression, Anxiety, and Stress

	b	SE	β	sr ²	p	95% CI [LL, UL]
DV: Depression
(Constant)	6.84	0.89			<0.001	[5.10, 8.75]
Autistic traits	0.21	0.02	0.40	0.01	<0.001	[0.17, 0.26]
Autism diagnosis	−1.70	0.51	−0.15	0.01	0.002	[−2.68, −0.70]
Age	−0.08	0.02	−0.15	0.02	<0.001	[−0.12, −0.04]
DV: Anxiety
(Constant)	6.79	0.60			<0.001	[5.68, 8.02]
Autistic traits	0.17	0.02	0.40	0.01	<0.001	[0.14, 0.21]
Autism diagnosis	−0.78	0.41	−0.08	0.01	0.078	[−1.59, 0.07]
Age	−0.09	0.02	−0.21	0.04	<0.001	[−0.12, −0.06]
DV: Stress
(Constant)	8.89	0.68			<0.001	[7.70, 10.13]
Autistic traits	0.19	0.02	0.45	0.12	<0.001	[0.16, 0.23]
Autism diagnosis	−0.96	0.41	−0.10	0.01	0.017	[−1.76, −0.18]
Age	−0.08	0.02	−0.17	0.03	<0.001	[−0.11, −0.05]

DVs: Depression, Anxiety, Stress: DASS-21 subscales; IVs: autistic traits: AQ total score; Autism Dx: 0 = no, 1 = yes; b: unstandardized regression weights; β: standardized regression weights; sr²: semipartial correlation squared; bootstrapped 1000 samples; Bonferroni-adjusted significance level (p ≤ 0.016).

DASS-21, Depression Anxiety Stress Scale.

Discussion

Existing literature has established a substantial overlap between autism and EDs, although knowledge of these co-occurring conditions mostly comes from studies where autistic traits or undiagnosed autism was newly identified in anorexia populations.^14,15,39 In the present study, we sought to expand upon this research by investigating ED rates and risk factors in a large sample of autistic and non-autistic women. Our objective was to assess the timing and sequence of autism and ED diagnoses in women with a known history of both conditions and to test whether a preexisting autism diagnosis was associated with differences in current ED and mental health risks. Our findings both support and challenge prevailing notions, offering new perspectives on the interplay between autism diagnosis, autistic traits, and ED risk.

We found that 28.6% of autistic women reported an historical ED diagnosis (anorexia most frequently, followed by BED and bulimia), and 35.4% currently displayed high-risk ED symptoms. This finding was higher than the upper range reported in the two previous estimates of EDs in autistic people (7%–20%)^44,47 and higher than rates of autism identified in ED populations.^14,15 We also found that high autistic traits were significantly overrepresented among those with historical ED diagnoses (49.1%) and those currently at high ED risk (58.4%). These findings markedly exceed rates of autistic traits found in ED populations elsewhere,^38,40,64 suggesting that previous accounts may underestimate the substantial degree of overlap between autism and EDs, possibly as a consequence of focusing on identifying autism in ED populations, rather than exploring rates of EDs in formally diagnosed autistic cohorts. Most notably, however, just 17% of autistic women had a received their autism diagnosis before they developed an ED. For the vast majority (74.5%), an ED diagnosis was followed by an almost 14-year delay before they were diagnosed with autism.

Diagnostic overshadowing

We found no significant differences in the age of first ED diagnosis between autistic and non-autistic women (∼18 years), which generally reflected ED age ranges observed in the general population.^65,66 The average age of autism diagnosis, however, was ∼30 years, which was significantly older than the age at which autism can be reliably identified in early childhood (3.5 years; M_age = 60.48 months, 95% CI: 50.12–70.83).^2,67 This finding may highlight limitations in the representativeness of our sample. However, it may also lend support to sociostructural understanding of sex-based disparities in autism diagnosis rates, possibly suggesting that as others have reported, stereotypically male conceptions of autism^4,8 and inequitable access to diagnostic services^25,68 are factors that have contributed to the widespread under- and late diagnosis of autistic girls and women. Viewed through an optimistic lens, the high proportions of adult-diagnosed women in our large overall sample may reflect recent improvements in clinical knowledge of the ways in which autistic girls and women present, resulting in greater representation in diagnosed cohorts. Yet, findings of the present study also highlight the relative invisibility of autistic girls and women, even when under the direct care of mental health professionals.

Consistent with Vagni et al.³⁸ who found that autistic girls in their sample frequently reached adolescence or adulthood without a diagnosis, despite receiving clinical care for other conditions, we also found that an ED was the initial diagnosis for most autistic women (78%). Fewer than 5% (N = 5) of autistic women in our sample were identified during the assessment and/or treatment of an ED, with the majority experiencing an average 12-year (SD = 9.56) delay before being formally diagnosed with autism. This finding may suggest widespread masking of autistic traits, which is known to be an effortful and taxing process that contributes to the development and maintenance of mental health concerns in general^6,69,70 and EDs specifically.³⁵ It is therefore plausible that autistic women are overrepresented in ED populations, as a consequence of societally reinforced masking behavior.⁷¹ While we are unable to consider masking as a potential confounder in the present study, this interpretation is consistent with findings that masking may delay the detection and diagnosis of autism,^68,72,73 it is likely that this explanation alone apportions too much responsibility on autistic girls and women to make themselves visible to clinicians³ and does not sufficiently address the need for greater clinical knowledge of autism in girls and women. What is clear, however, is that our findings describe a trajectory of missed opportunities in the detection and diagnosis of autistic women, both in early childhood and while receiving professional attention for an ED.

Autism diagnosis: A protective factor against ED risk?

By assessing the differential impact of autism diagnosis and autistic traits on ED risk, we found evidence of a nuanced relationship that was not apparent when comparing groups by autism diagnosis status alone. Overall, non-autistic women reported higher current ED risk than autistic women, implying that while overrepresented, autistic women were not at a greater risk of an ED than non-autistic women. This was somewhat unsurprising, given the disproportionately high rates of historical ED diagnoses reported among non-autistic participants (41%). However, it was only through examining the association of autistic traits, autism diagnosis, and ED risk that a more detailed picture was revealed. Consistent with Margari et al.,⁴⁴ we found that high autistic traits were associated with increased ED risk. This effect, however, was not uniform, as women with a formal autism diagnosis showed an 8-point reduction in ED risk scores, when compared with those with no formal autism diagnosis. While it is impossible to conclude that all women with high autistic traits but no autism diagnosis in our sample would, or should, receive an autism diagnosis if formally assessed, our findings lend support to the theory that access to timely and accurate autism diagnosis may be a protective factor that mitigates against the risk of developing an ED.

Indeed, autism diagnosis can serve as protection for developing mental health problems. This can happen by seeking more community support once a diagnosis is received,⁷⁴ enhancing self-esteem,⁷⁵ and by reconfiguring one’s sense of self and appreciation of individual needs.⁷⁶ When we considered other mental health risks, we again found that high autistic traits were associated with higher levels of depression, anxiety, and stress symptoms, which largely supports what is known about the overrepresentation of mental health concerns among autistic people.^27–29 Having a formal autism diagnosis was associated with a significant reduction in depression symptoms, but had no significant impact on anxiety or stress levels, suggesting that other factors are much more salient in understanding experiences of stress and anxiety. It is not possible to determine whether these broad mental health concerns were directly related to current ED risk in this instance, although existing literature demonstrates high rates of co-occurrence between anorexia, bulimia, BED, and anxiety disorders (37%–60%),^77–79 and with major depressive disorder (40%–75%).^80,81 Another possibility is that without access to autistic self-knowledge and neuro-affirming therapeutic supports, the mental health of late-diagnosed women is further compromised. This, however, is an area that requires further investigations. Future research should focus on understanding if, and what, differences exist in mental health outcomes autistic self-knowledge.

Limitations

The present study is not without limitations. These include complexities in case classification, self-selection bias, and study design issues. First, we suspect that the frequency of high autistic traits in women without an autism diagnosis highlights issues in relying on trait-level characteristics or a formal diagnosis as a basis for accurately classifying participants as autistic or non-autistic. This may be complicated by the ubiquity of underdiagnosis of autism among women^10,82,83 and is likely to be exacerbated by our use of the AQ as a measure of autistic traits. Despite common usage in clinical and nonclinical settings, the AQ shows limitations in sensitivity for capturing gendered differences in autism presentation, and in specificity for identifying individuals who meet the criteria for a formal diagnosis.^84,85 While we demonstrated that women with high autistic traits and no autism diagnosis displayed mental health outcomes that resembled the experiences of autistic women, we acknowledge that this finding should be interpreted with caution, as it is not an adequate substitute for a formal assessment done by a qualified professional.

Second, we acknowledge that the lack of randomness, exclusive focus on cisgender women, and self-selecting nature of this sample may impact the generalizability of our findings. Advertising materials specified that the purpose of this study was to examine the relationship between autism and EDs in women. This likely leads to a degree of sampling bias, indicated by the disproportionately high rates of EDs among both autistic and non-autistic participants, relative to rates observed in the general population.⁸⁶ Furthermore, while autism can be reliably diagnosed between 18 and 24 months,² the average age of autism diagnosis in the present study was ∼30 years, indicating that our findings may not be generalizable to women who received an autism diagnosis in childhood. Longitudinal or experimental research will be necessary to establish any causal relationships between the timing of autism and ED diagnoses, as is the ability to control for confounding factors such as camouflaging in analyses, particularly as it has been shown to predict an older age at autism diagnosis.⁷³ As such, the associations reported in our cross-sectional study provide a useful early indicator of possible diagnostic overshadowing, but more robust investigations and mixed-methods approaches are needed to account for the individual and environmental factors associated with late diagnosis of autism in women who experience a co-occurring ED.

Finally, the use of self-report measures to assess symptoms of mental health conditions likely impacts the veracity of our findings. While self-report measures are practical and inexpensive, particularly in large samples, they do not provide the same level of nuance, context, or detail as a clinical interview, as they rely solely on an individual’s ability to accurately recall and report their experiences.^87,88 These issues are not unique to the autistic population, as many autistic people have a deep capacity for self-reflection, and all should be regarded as expert narrators of their own lived experience.^89,90 However, they may be further complicated by inaccessible or vague language, narrow response options that require an aggregate estimate of experiences over an extended period of time,^91–95 and alexithymia, which is reported by up to 50% of autistic people.^96,97 We therefore suggest that future research should prioritize the use of mixed-methods study design and validated measures that have been coproduced with and for autistic people.^98,99

Clinical implications

Findings from the present study have several implications for clinical practice and future research priorities. Most pressing of these is the task of increasing the visibility of autistic girls and women, with the aim of reducing the incidence of delayed and missed autism diagnoses. While not explored in our current research, this assertion similarly applies to gender-diverse autistic people, who are also typically diagnosed at an older age than autistic males.¹⁰⁰ General practitioners and mental health service providers must be better equipped to detect diverse presentations of autism, so that initial screening and referral to diagnostic teams are progressed in a timely manner where appropriate.^48,101 Furthermore, as demonstrated in the present study, possessing high autistic traits has clear implications for the mental health of autistic women, and particularly so for those with high autistic traits but no formal diagnosis. Existing research on the impact of autistic traits on ED treatment outcomes has revealed that individuals with high autistic traits often face unique challenges in traditional ED treatments and may have poorer outcomes.^16,34,102 Specific efforts to modify ED treatment approaches to better meet the needs of autistic individuals are emerging and may include adapting communication styles, considering alternative therapeutic approaches, and creating more autism-friendly treatment environments that consider the impact of sensory processing differences.^17,18,55 Importantly, there is a growing recognition of the need for individualized, autism-informed approaches to ED care, as typical ED treatment approaches may not adequately address their specific needs or communication styles. As such, our findings lend support to calls for greater screening for autism in ED cohorts,⁴⁸ as it is only through the disruption of the status quo that the under-recognition of autistic girls, women, and gender-diverse people will improve.

From a research perspective, there is emerging evidence that camouflaging behaviors are associated with ED risk among autistic people,³⁵ although further research is needed to investigate why women with high autistic traits, but no autism diagnosis, experience the most severe depression, anxiety, and stress symptoms, in addition to the highest ED risk. The development of screening instruments that reflect diverse presentations of autism will be crucial for enabling this process and may serve to increase clinician understanding while also removing barriers to self-knowledge and the formation of a positive autistic identity.^103–105 It is important to acknowledge that many involved in the management of EDs may be unfamiliar with the characteristics of autism.^101,102 Therefore, the involvement of multidisciplinary teams for mental health diagnoses and treatment, which include professionals with autism-specific training and knowledge, is strongly encouraged and may go some way toward improving intervention approaches that better meet the needs of autistic people with co-occurring mental health concerns^55,106 while also reducing the incidence of diagnostic overshadowing or missed diagnoses.

Conclusions

Finally, while the diagnosis gap between men, women, and gender-diverse individuals continues to narrow overall,^1,2 it is essential to remember the individual toll that structural barriers can impose. Our study may contribute to closing this gap through highlighting the complex interplay between autism, EDs, and mental health in women, and underscoring the urgent need for improved diagnostic processes, tailored interventions, and increased societal understanding of diverse presentations of autism. However, for the many individuals who learn they are autistic at a younger age and experience higher well-being and quality of life,¹⁰⁷ there are still many who learn they are autistic as adults and experience grief for the struggles their prediagnosis self-experienced, and sorrow for the self-directed blame they endured before knowing that they are autistic.^83,108–113

Footnotes

Authorship Confirmation Statement

C.M.B.: Conceptualization, investigation, methodology, formal analysis, and writing—original draft and reviewing and editing. M.A.S. and D.H.: Supervision, methodology, formal analysis support, and writing—reviewing and editing. M.H., S.M.H., M.F.-T., and I.K.: Supervision and writing—reviewing and editing. The article has been submitted solely to Autism in Adulthood.

Author Disclosure Statement

The authors declare no actual or potential conflict of interest. D.H. declares he is the Deputy Editor for Autism in Adulthood but was not involved in the editorial process for this article.

Funding Information

C.M.B. receives financial support from a Suicide Prevention Australia National Suicide Prevention Post-Doctoral Fellowship.

Supplementary Material

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