Minority Stress in Autistic Populations - 1

Extending the Minority Stress Model to Understand Mental Health Problems Experienced by

the Autistic Population

by

Monique Botha* and David M. Frost

*Corresponding author
Monique Botha
University of Surrey
Guildford
Surrey
GU2 7XH
[email protected]

Citation:
Botha, M. & Frost, D.M. (in press) Extending the Minority Stress Model to Understand
Mental Health Problems Experienced by the Autistic Population. Society and Mental Health
DOI: 10.1177/2156869318804297
Minority Stress in Autistic Populations - 2

Abstract

Research into autism and mental health has traditionally associated poor mental health and

autism as inevitably linked. Other possible explanations for mental health problems among

autistic populations have received little attention. As evidenced by the minority disability

movement, autism is increasingly being considered part of the identities of autistic people.

Autistic individuals thus constitute an identity-based minority and may be exposed to excess

social stress as a result of disadvantaged and stigmatized social status. This study tests the

utility of the minority stress model as an explanation for the experience of mental health

problems within a sample of high-functioning autistic individuals (N=111). Minority

stressors including everyday discrimination, internalised stigma, and concealment

significantly predicted poorer mental health, despite controlling for general stress exposure.

These results indicate the potential utility of minority stress in explaining increased mental

health problems in autistic populations. Implications for research and clinical applications are

discussed.
Minority Stress in Autistic Populations - 3

Extending the Minority Stress Model to Understand Mental Health Problems Experienced by

the Autistic Population

Over the last two decades, the meaning of the diagnosis of Asperger Syndrome (AS)

and High-functioning autism (HFA) has changed, with more autistic individuals considering

autism central to their identity as opposed to a disorder (Aylott 2000; Bagatell 2007; Elliman

2011). The vast majority of research into HFA/AS has tended towards researching the autism

spectrum through the biomedical model, specifically its aetiology and a possible cure

(Pellicano, Dinsmore, and Charman 2014) rather than recognizing HFA/AS as normal forms

of variation in human psychology. Less than 1% of autism research funding in both the

United States and the United Kingdom has gone into researching adults on the spectrum, nor

any social factors that may contribute to the high rates of mental health problems experienced

by people on the autism spectrum (Pellicano et al. 2014). Increasingly autistic people

themselves are beginning to consider AS and HFA a form of neurodiversity, and a key part of

their identity (Bagatell 2010; Kapp et al. 2013); as central as other social identities such as

their sexuality or race (Brown 2017). Under a minority model of disability, HFA and AS

represent a distinct socio-political experience as neurominorities with wide ranging diversity

(Altman 2001; Jaarsma and Welin 2012). ‘Neurominority’ is a relatively new term coined to

describe those who fall under the neurodiverse model (Walker 2012). This study will

examine how stress related to social stigma (e.g., Frost 2011) contributes to heightened rates

of mental health problems experienced by the autistic community. We highlight the utility of

social stress models (Meyer 2003; Meyer, Schwartz, & Frost, 2008) in understanding mental

health and wellbeing in autism.

Minority Stress in Autistic Populations - 4

Autism as identity

The biomedical model aims to cure disability (Rioux, Bach, and Roeher Institute 1994).

Understanding disease from this model is only logical considering the need to treat and cure

life threatening illness, however, it creates tension when considering disorders such as

autism, dyslexia, and dyspraxia (Ward and Meyer 1999). The biomedical model relies on

identifying disease and creating meaningful interventions to cure the person who is suffering

(Bagatell 2010; Rioux et al. 1994). The traditional idea of autism is one in which a person

does suffer (Kanner 1971). Viewing autism from a biomedical model has been opposed as it

leads to dehumanizing research and treatment of autism (Tyler Cowen 2009). For example, it

has been claimed that an autistic community cannot exist due to a central tenant of autism- a

lack theory of mind, meaning autistic individuals are too introspective to want to or be able to

form community connections (Barnbaum 2008). Similarly, it has resulted in work where they

are compared less favourably to brain damaged monkeys (Bainbridge 2008). The minority

model of disability formed partly as opposition to these notions.

The rise of the minority model of disability specifically challenged the medical model’s

notions of disability (Rioux et al. 1994; Smart 2006). The minority model of disability is

underpinned by the notion that one can have something the medical model considers a

disability, but in actuality, it is a society with restrictive notions of normal that creates

disability (Altman 2001; Smart 2006). The Deaf community is an example of a community

considered disabled by the medical model, and who reject that status, considering themselves

to be a cultural group defined by the use of sign language (Smart 2006). The Autism Network

International was the first self advocacy group created by and for autistic individuals, in part

to combat the biomedical view of autism (Ward and Meyer 1999). Narratives of autistic self-

advocacy are challenging the notions put forward from the biomedical model, and under the

banner of neurodiversity, claiming minority status (Kapp et al. 2013).

Minority Stress in Autistic Populations - 5

Individuals who are affected have come to consider autism an intrinsic part of an identity

(Bagatell 2010; Kapp et al. 2013). In fact, autism is sometimes as central to the identity of

autistic individuals as race, ethnicity, sexuality, gender or nationality (Brown 2017), a claim

often put forward by the Neurodiversity movement (Neurodiversity itself falling under a

minority model). Thus, the minority model of disabilities may provide a basis on which

autistic individuals can consider themselves within their own terms, and with dignity (Dunn

and Andrews 2015). It has even been proposed that those with AS and HFA form an ethno-

cultural minority akin to the Deaf community (Jaarsma and Welin 2012).

Thus, in the last two decades, what bio-medical researchers originally considered a

disorder, has come to be a central feature of identity to some. Therefore, it is important to

understand whether these minority identities leave autistic individuals vulnerable to the extra

social stresses suffered by other minority communities as a result of social stigma and

disadvantaged social status. Similarly,

Stigma as Stress Resulting from Labelling Processes

The process by which stigmatization occurs begins with the process of labelling. A

label is a definition, which categorizes a person by his or her characteristics (Link and Phelan

1999). Labelling in the case of AS/HFA involves a comparison of autistic individuals against

their non-autistic peers and the assignment of meaning to those differences (Bagatell 2010;

Elliman 2011; Hacking 2012). Most adults with HFA/AS will be aware of the differences

between themselves and those not on the autism spectrum (Aylott 2000). Being aware of

these differences is not an issue, until a value is assigned to them; whether it is perceived as a

positive, neutral or negative difference. Labels absorb the meaning society gives them and

thus, assigning value-based meanings to labels can often perpetuate stigma (Link and Phelan

1999); for example, a stereotype attached to autism is “loner” (Aylott 2000). In a study

investigating the stereotypes non-AS peers held towards autistic individuals, 9 of the top 10
Minority Stress in Autistic Populations - 6

terms used to describe AS individuals were negative (Wood and Freeth 2016). A separate

study found the behaviours central to autism were stigmatized (Butler and Gillis 2011).

The effects of stigma can be long lasting, and limit the quality of life available to the

stigmatized group (Markowitz 1998). A two year study on mental health and stigma showed

that exposure to stigma designated the self-worth individuals afforded to themselves

(Wright, Gronfein, and Owens 2000). Considering 9 out of 10 stereotypes afforded to autism

are negative, there is the possibility of high exposure to stigma. Similarly, that this exposure

has similar consequences.

The stigma afforded to autistic individuals likely explains why multiple studies have

found a high risk of victimisation in the HFA/AS community; including physical, verbal, and

sexual victimisation across the life-span from childhood (Little 2002), to adulthood

(Rosenblatt and National Autistic Society 2008). Similarly, autistic individuals are more

likely to face workplace discrimination in terms of unfair dismissal, workplace harassment,

underemployment, and unemployment (Baldwin, Costley, and Warren 2014; Barnard et al.

2001; National Autistic Society 2012). Social rejection can also be internalized and self-

perpetuating. For example, as a result of experiences of rejection, neurominorities may

become embroiled in a negative self-concept, built upon the foundation of social rejection

(Link et al. 1989). While the previously discussed research into victimisation and

discrimination documents high rates of exposure among autistic populations, researchers

have yet to focus on the impact of victimisation on the wellbeing of autistic individuals.

The Potential Utility of Minority Stress Theory

The primary aim of the minority stress model is to explain disparities in health

between majority and stigmatized minority groups (Meyer 2003). Social stress theory hinges

on the idea that social disadvantage can translate into health disparities (Schwartz and Meyer

2010). Researchers hypothesize that decreased social standing leads to stigmatized minority
Minority Stress in Autistic Populations - 7

groups being exposed to more stressful life situations, with simultaneously fewer resources to

cope with these events. Social structure facilitates this process through acts of discrimination

and social exclusion, which are added stress burdens that socially advantaged groups are not

equally exposed to.

The minority stress model has most frequently been used to explain both mental and

physical health disparities (Meyer 2003). Studies have consistently shown sexual minorities

to have higher stress burdens, while simultaneously experiencing higher rates of poorer

physical and mental health (Frost, Lehavot, and Meyer 2015; Herek, Gillis, and Cogan 1999;

Meyer 2003; Meyer and Dean 1998); Cochran and Mays 2000; Gilman et al. 2001; Herek et

al. 1999; Zietsch et al. 2011). To a lesser degree, the minority stress model has been used to

highlight disparities in added stress and negative health outcomes in African-American

populations (Feagin 1991; R. Williams and Williams-Morris 2000). Most pertinently for the

study at hand, minority stressors have also been shown to impact on the severity of

depressive symptoms experienced by those with physical disabilities (Brown 2017).

Four premises underpin the minority stress model. The first premise is that not all

differences are discrepancies; an increase, for example, of certain illnesses with age, is a

difference to be expected and is therefore not a discrepancy (Schwartz and Meyer 2010). The

second premise is that the theory is based on the law of averages, and average effects.

Although it is hypothesized that the social disadvantage influences the group in the entirety if

a subgroup remains unaffected it does not falsify the overall theory (Schwartz and Meyer

2010b). The third premise is that the social stress theory applies causally to overall health

rather than specific disorders. The fourth premise is that social stress theory is specifically

about the sociological category of disadvantage produced by exclusionary social hierarchies,

rather than anything specific about that group (Schwartz and Meyer 2010). In essence, the

social group is devalued based on societal norms, thus, being in keeping with the minority
Minority Stress in Autistic Populations - 8

model of disability, which posits that disability (and co-morbiding psychological outcomes)

stem from an inflexible society which has a preference for non-disabled individuals (Smart

2006). As shown in the paragraph above, support for this is shown by Brown (2017) who

demonstrates the utility of understanding perceived stigma and coping in populations with

physical disabilities, and how it may enhance our understanding of mental health outcomes.

Meyer and Schwartz discuss that it is unreasonable for any researcher to extend the

model where there is no existing documentation for disparities between populations

(Schwartz and Meyer 2010). A health disparity exists between autistic and non-autistic

individuals, with those on the spectrum regularly found to have higher rates of physical and

mental health problems (Baldwin and Costley 2016; Baldwin et al. 2014; Gillberg et al. 2016;

Hirvikoski et al. 2016; Kamio, Inada, and Koyama 2013; Locke et al. 2010; Shefcyk 2015).

A recent study showed an elevated risk of premature mortality for autistic individuals by on

average two decades compared to non-autistic peers (Hirvikoski et al. 2016). The

predominant cause of early death in HFA/AS was suicide (Hirvikoski et al. 2016). Rates of

depression, suicidality, PTSD, and poorer mental health are all higher in autistic populations

than non-autistic populations (Gillberg et al. 2016; Kerns, Newschaffer, and Berkowitz 2015;

McManus 2009; Mikami et al. 2009).

Current Study

Applying the minoity stress model to understaning social factors relevant to health in

the context of HFA/AS could begin to account for the additional stress burden faced by the

autistic community, and potentially redefine what is known about autism and psychological

wellbeing. The current study extended the minority stress model to examine the extent to

which stigma-related stressors are associated with diminished wellbeing experienced by the

HFA/AS population. We hypothesized that there would be a relationship between minority

stressors and poorer mental health outcomes, such that greater amounts of reported minority
Minority Stress in Autistic Populations - 9

stress would be associated with poorer mental health and wellbeing. In testing the potentially

unique contribution that minority stress makes to mental health among HFA/AS individuals,

we further hypothesized that associations between minority stress and mental health and

wellbeing outcomes would persist above and beyond the contribution of general stressful life

events known to impact the health of everyone, regardless of disadvantaged social status

(Frost et al, 2015).

Method

Participants

An online survey was used to test the current study’s hypothesis. Conducting the

study using the internet allowed for a method consistent with the way in which autistic

individuals communicate regularly; it has been noted that the internet allows for

communication unfettered by social interaction (Bagatell 2010; Benford and Standen 2009;

Hacking 2012; Jordan 2010). The survey, which is detailed below was circulated to autistic

individuals via the Qualtrics survey system. Inclusion criteria were a minimum age of 18 and

to consider oneself autistic. An official diagnosis was not necessary to participate. This

decision was made in order to ensure that those who have been unable to access a diagnosis

due to cost or personal circumstance, but still feel part of the autistic community, could

participate (as has been done in other studies e.g. Kapp et al. 2013).

A total of 142 participants completed the survey. All participants that had extensive

missing data (i.e., multiple variables were missing data) were removed (n= 31), resulting in a

final sample of N = 111 participants. Table 1 presents the demographic information for the

final analytic sample. Potential demographic limitations (e.g. gender) are discussed later.

Procedure

A survey was developed using the measures described below to assess minority stress

experiences in the autistic community. Non-probability sampling techniques were used.

Minority Stress in Autistic Populations - 10

Recruitment was conducted within the following online groups: Aspergers Reality, Autistic

Women's Association, The Aspie Cloud, Asperger Safe Room, Adults with Asperger

Syndrome, Wrong Planet, Neurodiverse UK, Autism Action NZ, Autism Worldwide,

Autistics UK, and Heart for Autism. It was distributed to AS/HFA community pages with

permission from community moderators. Sampling evolved into a snowball technique as

participants referred other people from outside these groups to the survey. After each

participant had consented they completed a 14-minute survey, with the chance of winning a

£50 voucher to a popular online retailer. This research received a favourable ethical opinion

from the University of Surrey ethics committee prior to the commencement of data

collection.

Measures

Demographic information. Participants reported their gender, age, and ethnicity.

The options presented for gender were ‘male’, ‘female’, and ‘other’. Where a participant

selected ‘other’, they were asked for a perscriptor of gender they felt comfortable with. Age

was reported by participants in a numerical entry box in the survey. Ethnicity was recorded in

line with British census categories (as the research was primarily based in Britain). If none of

the categories presented were relevant, participants could select the ‘other’ box, and were

consequently asked to provide a descriptor for their ethnicity and race. Diagnosis was self-

reported, with participants reporting if they had an official diagnosis, and, if so, providing the

details of it following the procedure used in Kapp et al. (2013).

General stressful life events. (Adapted from Slopen et al. 2011) The stressful life

events inventory was used to assess the impact of stressful life events on wellbeing. The

inventory is a ‘yes/no’ inventory. The measure is not related to minority stress, but rather

general life stress. The measure was coded in such a way that higher scores reflected more
Minority Stress in Autistic Populations - 11

stressful life events in the 12 months prior to taking the survey. Questions included items

such as ‘you recently ended a long-term relationship’.

Victimisation and discrimination events. (Cronbach’s alpha = 0.72, 8-items).

Victimisation and discrimination measured the extent to which participants have faced

discriminatory events in the last 12 months. The scale is on four points from never (0) to

three times or more (3). Scores were coded (summed) in a way that higher scores reflected

higher frequencies of victimisation and discrimination. Questions included items such as ‘you

were hit, beaten, physically attacked, or sexually assaulted’.

Everyday discrimination. (Williams et al. 1997; Cronbach's alpha = .87, 8-items).

Experiences of everyday discrimination were measured with the everyday discrimination

scale, which specifically measures covert discrimination. The measure used a four-point scale

from often (3) to never (0) and asked questions such as ‘in your day-to-day life over the past

year, how often did any of the following things: People acted as if they thought you were not

smart’. The scale was coded (summed) in a way that higher scores reflected greater everyday

discrimination.

Expectation of rejection. (Meyer, Schwartz, & Frost 2008; Link 1987; 6 items,

Cronbach’s alpha = 0.90). Experiences of expecting rejection were measured using the

‘Expectation of Rejection’ scale. It asked you to consider your disability, gender race, and

then presented items such as ‘employers will not hire a person like you’. Participants

responded on a scale that ranged from strongly agree (4) to strongly disagree (0). Scores were

coded (summed) so that higher scores reflected a higher expectation of rejection.

Outness. (Adapted from Meyer et al. 2002; Cronbach's alpha = 0.71; 4- items). The

outness scale measured the degree to which people on the spectrum disclosed to peers,

colleagues, non-autistic friends, healthcare providers or family. Responses scaled from out to

all (4), to out to none (1) The scale was coded (summed) so that higher scores reflected
Minority Stress in Autistic Populations - 12

higher outness. The wording of ‘outness’ was still used with regards to autism and disclosure

because it is a term the community has adopted to describe disclosure (Jones, n.d.).

Physical concealment. (Cronbach’s alpha = 0.83, 5 items). The physical concealment

scale was designed specifically to measure the extent to which participants physically conceal

behaviours associated with autism. It asked participants to recall whether they had had certain

experiences in the last 12 months. The measure contained questions such as ‘I have

purposefully avoided disclosing being autistic on official documents (job applications etc.)’.

Participants responded on a scale from never (0) to always (3) The measure was coded

(summed) in such a way that higher scores reflected higher behavioural concealment.

Internalized stigma. (Adapted from Meyer and Dean 1998; Cronbach’s alpha =0.84;

8 items). Used in an adapted format (specific to autism) to measure the extent to which

individuals reject their status on the autism spectrum. It had questions such as ‘you have felt

alienated from yourself because of being on the Autism Spectrum’. It contained adjusted

questions, of which the language was changed to relevant terms, but the concept remained the

same. It also added two novel questions addressing certain unique aspects of HFA/AS. It was

measured on a scale from strongly disagree (1) to strongly agree (5). It was coded (summed)

in a way in which higher scores reflect more intense feelings of internalized stigma with

regards to being autistic.

Wellbeing. (Keyes et al. 2008) The mental health continuum (MHC) was used in its

three subscales; social (5 items), emotional (3 items) and psychological (6 items) wellbeing,

with respective alpha ratings of .84, .91 and .87. The subscales were used individually to

capture quintessential aspects of various forms of wellbeing (social, emotional and

psychological) and examine how different forms of wellbeing inter-related to minority stress

variables. They were coded (summed) in a way that lower scores reflected poorer wellbeing.
Minority Stress in Autistic Populations - 13

Psychological distress. (Kessler, 2003; Cronbach’s alpha = 0.84) The psychological

distress scale (K6) was originally developed by the US department of national health

statistics. The K6 was designed to be sensitive around clinical thresholds for mental health

disorders, with the short form (6 item) being ‘as sensitive’ as the ten-item survey (Wittchen

2010:10). Items on it included ‘how often during the past month did you feel… nervous?

…fidgety? …worthless?’. The response scale ranged on five points from all the time, to none

of the time. It was coded (summed) in such a way that higher scores reflected higher

psychological distress.

Results

Descriptive and Bivariate Analyses

SPSS 24 was used to conduct all analysis. Chi-Square tests were carried out to

identify whether any differences of note (gender, ethnicity, autism type, age of diagnosis, age

of identifying as autistic, diagnosis status, autistic symptoms, and mental health outcome

variables) existed between those included and those excluded, however, none were detected;

(p ≥.082). Where there was a single missing value per case, the mode was computed and

input; there were only 25 values missing across all cases, and exclusion from the sample

based on one missing value would be extreme (all means and standard deviations can be

found in Table 2).

Data were examined to identify whether distributions met parametric standards. All

variables were normally distributed apart from victimisation and discrimination, which was

skewed. To correct for skewness, this variable was transformed into a binary variable

(Walters 2009). The variable was divided on the basis of exposure the specific items of the

inventory: no exposure = 0; any exposure = 1.

Bivariate analyses are presented in (Table 2). Correlations of variables raised some

concern regarding multicollinearity with independent variables having medium to high

Minority Stress in Autistic Populations - 14

correlation. Regression models with diagnostic information for multicollinearity were

performed to further examine multicollinearity. Variance inflation factor scores (VIF) were

all below 2, originally suggesting little to no multicollinearity. However, upon further

inspection multicollinearity was identified within eigen values (≤.01), condition indexes

(≥15), and variance proportion scores (≥.85). Theoretically, it is likely that minority stressors

may not be independent, but rather have a relation to each other, causing multicollinearity. In

order to address this issue, ridge regression (RR) was used to test the study hypotheses.

RR is an extension of linear regression. When there is a problem with multi-

collinearity, RR can be preferable to ordinary least squares (OLS) regression (Helwig 2017;

Jacobucci, Grimm, and McArdle 2016; McNeish 2015). This is because OLS regression

performs poorly with highly correlated variables, or where there are many predictor variables

as it causes large prediction intervals, making the model uninterruptable (Helwig 2017).

Ridge regression has been shown to be more effective at providing accurate results than other

forms of non-penalised regression (OLS, stepwise etc.) when multicollinearity is present

(Abram et al. 2016; Eledum 2016; Firinguetti, Kibria, and Araya 2017; Zhang and Ibrahim

2005). Introducing a small increase in bias can result in a large decrease in prediction error.

It is a process of trade-off between bias and variance (Marquaridt 1970). The small ‘penalty’

(λ) on the OLS estimators will reduce the variability of the estimators, making them more

stable, easier to interpret, and more likely to transfer to new samples (Helwig 2017).

Penalized regression has been highlighted as a good tool available to psychologists to

increase the replicability of their research (Helwig 2017). Thus RR was chosen as the

appropriate statistical method to approach the data with.

The penalty coefficient ranges from 0 (no penalty) to 1, on a .01 increment (Helwig

2017). The higher the penalty terms, the less variance, but also the smaller the beta

coefficients. As such, it is a process of balancing. SPSS uses an iterative approach, which

Minority Stress in Autistic Populations - 15

runs multiple versions of the model using different penalties to find that which best balances

bias, variance, and error. Using either cross validation or bootstrap .632 method of

resampling is standard practice when using RR (hence it is built into SPSS as part of the RR

algorithm) (a comprehensive explanation of the .632 method can be found in Efron and

Tibshirani 1997). This paper uses the .632 estimator bootstrap method, as research has shown

it to be more reliable (Efron and Tibshirani 1997; Linting et al. 2007). A randomised

selection of fifty different cases were included in each iteration (with 1000 iterations run),

and a mean standard error (MSE) computed from that. Similarly, the estimate of standard

error on the standardized coefficients was calculated using bootstrapping with 1000 samples.

This acts as a form of confidence intervals on the standardized beta coeeficients. No

unstandardized betas are calculated because standardization of all variables is undertaken

before RR is computed.

The demographics used in the analysis (ethnicity, gender, diagnosis status) were

included as binary variables. They were coded into majority/minority cases (as seen in

Meyer, Schwartz, and Frost 2008). Gender was coded as male 1, female and other 2.

Ethnicity was coded as White British, other White 1, mixed/multiple, Black British, Asian,

and other 2. Having a diagnosis was coded as 1, while no official diagnosis was coded as 2.

Codes used were 1 and 2 as the ridge regression function in SPSS reads 0 as missing data.

Similarly, due to this same issue, cases where a variable computed to a true 0 had to be

recoded, as advised by the software manual (IBM n.d), to a very small non-0 value (1×10-6).

This allowed it to be included in the analysis without adverse consequences on the result.

Results of Ridge Regression Analyses

The results of RR models predicting each of the mental health and wellbeing

outcomes are shown in Table 3.

Minority Stress in Autistic Populations - 16

The regularization penalty applied to the social wellbeing model was λ=.12. Social

wellbeing was significantly predicted by the behavioural concealment of autism, and

expectation of rejection. The model accounted for 58% of the variance in social wellbeing

F(38,72)=2.55, p<.001, R²=.58, MSE=.87. The significant standardized coefficients showed

that lower levels of social wellbeing were associated with higher levels of expectation of

rejection and behavioural concealment of autism. Gender was also associated with social

wellbeing; however, the sample size difference between men and women (and other), meant

this could not be explored further.

The regularization penalty applied to the emotional wellbeing was λ=.12. Emotional

wellbeing was significantly predicted by internalised stigma and diagnosis status. The model

accounted for 48% of the variance in emotional wellbeing, F(32, 78)=2.40, p=.001, R²=.48,

MSE=.89. The significant standardized coefficients indicated that lower levels of emotional

wellbeing were associated with higher levels of victimisation and discrimination, everyday

discrimination, expectation of rejection and internalised stigma.

The regularization penalty applied to the psychological wellbeing model was λ=.26.

Psychological wellbeing was significantly predicted by expectation of rejection, outness,

stressful life events and everyday discrimination. The model accounted for 58% of the

variance in psychological wellbeing F(32, 78)=3.57, p=.000, R²=.57, MSE=.85. The

significant standardized coefficients indicated that lower levels of psychological wellbeing

were associated with higher levels of victimisation and discrimination, everyday

discrimination, expectations of rejection, and outness. Psychological wellbeing was also

associated with ethnicity. The difference based on ethnicity could not be explored as the size

of the sample differed too extremely.

The regularization penalty applied to the psychological distress model was λ=.22.

Psychological distress was significantly predicted by everyday discrimination, expectation of

Minority Stress in Autistic Populations - 17

rejection, outness, internalised stigma, and diagnosis status, the model accounted for 72% of

the variance of psychological distress F(36, 74)=6.15, p<.001, R²=.72, MSE=.73. The

significant standardized coefficients indicated that higher levels of psychological distress

were associated with higher levels of everyday discrimination, expectation of rejection,

outness, and internalised stigma, and having a diagnosis status.

Discussion

The aim of this study was to investigate the utility of the minority stress model in

understanding how stigma-related stressors contribute to mental health and wellbeing

problems in the autistic population. Originally designed to investigate sexual minorities and

ethnic minorities; the minority stress model (Meyer 2003) has provided a novel way to

consider the experience of being HFA/AS. The findings suggest that autistic individuals

experience an added stress burden in the form of minority stress. This stress burden is a

potentially preventable factor in the mental health and wellbeing disparity seen in the autistic

population. Minority stressors such as victimisation and discrimination, everyday

discrimination, expectation of rejection, outness, internalised stigma, and physical

concealment of autism consistently predicted diminished wellbeing and heightened

psychological distress.

Thus, these findings provide the first, albeit preliminary, support that the minority

stress model can be usefully extended to understand mental health and wellbeing problems

faced by the HFA/AS population in that greater exposure to minority stressors are associated

with poor mental health and wellbeing. Even further, it is important to note that these

associations between minority stressors and mental health indicators persisted above and

beyond the effect of general life stress and other demographic factors known to be associated

with health and wellbeing (e.g., gender, race/ethnicity). Thus, these findings support previous
Minority Stress in Autistic Populations - 18

research indicating that minority stress has a unique and additive negative effect on health,

which is not reducible to general stress alone (Frost et al. 2015).

Everyday discrimination was highly positively correlated with the expectation of

rejection, which is something that should be investigated further. With each small act of

discrimination it would, theoretically, make sense that expectations of rejection would

increase. This association between smaller events of discrimination and the expectation for

rejection is a sentiment that previous papers have expressed (Link and Phelan 1999; Stucky et

al. 2011).

Outness, in the case of HFA/AS, was associated with poorer mental health in the form

of lower psychological wellbeing and higher psychological distress. These findings run

contrary to some findings from research on outness and wellbeing among sexual minorities,

which indicate outness is beneficial for wellbeing (Daley 2010; Legate, Ryan, and Rogge

2017). A potential explanation for this discrepancy is that when HFA/AS individuals

disclose their status on the spectrum it opens them up to more acts of discrimination. Within

the minority stress literature the safeness of the environment is taken into account; in one

situation outness may be therapeutic and in another, outness could be considered a risk (di

Bartolo 2013). Such situational differences are highlighted by the ‘Don’t Ask, Don’t Tell’

(DADT) policy that was for a time implemented in the US armed forces (Davis 2010), where

outness of LGBT status threatened one’s career and safety within the army. The DADT

policy affected the mental health of soldiers whether or not they disclosed, but more so when

they did (Barber 2012). The potential wellbeing detriment of disclosure in autism could

represent the effect of social punishment for being outside of the expected norm of

neurotypicality. As previously discussed, the rate of unfair dismissal and bullying in the

workplace is high for HFA/AS individuals (Baldwin et al. 2014). As tolerance and

acceptence for neurodiversity and the autistic population increases, the direction of the
Minority Stress in Autistic Populations - 19

relationship between outness and mental health may change. While others have postulated

that openness may reduce stigma (Corrigan, Kosyluk, and Rüsch 2013) the present results

indicate that it can also be a factor in reduced wellbeing for the person ‘coming out’.

Eventually it may also represent a therapeutic process that will correlate with lower

internalised stigma and better mental health as it does currently with LGBT communities in

most Western situations (di Bartolo 2013).

Similarly, labelling theory (Link & Phelan 1987) may also explain why outness

decreases mental health and wellbeing; post diagnosis, certain labels are attached to the

individual and stereotypes often attached to autism are rarely positive, with 9 of 10 being

derogatory (Wood and Freeth 2016). However, there was a significant negative relationship

between psychological distress and diagnosis, with higher distress experienced among those

with a diagnosis. Increased expectation of rejection in the diagnosed group may reflect the

stigma that comes from having a proper diagnosis, or the stress of then having to hide this

aspect of the self.

Clinical Implications

In light of the results, the findings of this study, if upheld in further research, could

mark a change in the way we consider mental health and wellbeing in the autistic community.

Previously, poor quality of life (Barnbaum 2008; Kamio et al. 2013) has been intrinsically

linked with autism, without the consideration that negative social factors (i.e., minority

stress) may play a part in the wellbeing disparity experienced by autistic individuals. In

Kamio et al. researchers investigating suicidal ideation in those on the spectrum found that

three-quarters of their sample had suffered from bullying, yet still attributed suicidal ideation

to the characteristics of autism (2011). This research has expanded the focus to include the

wider implications of discrimination on members of the autistic community. These findings

may shed light on the experience of autistic individuals in society and highlight the
Minority Stress in Autistic Populations - 20

consequences of the discrimination and victimisation highlighted in other research; for

example, increased employment discrimination, sexual victimisation, bullying, isolation and

homelessness (Baldwin and Costley 2016; Brown-Lavoie, Viecili, and Weiss 2014; Carter

2009; Heinrichs and Myles 2003; Homeless link 2014). This reframing of perspectives on

autism can reflect a movement in which mental health problems such as depression, anxiety,

and suicidal ideation are no longer considered inherent to autism (as in Kamio et al. 2013).

Limitations and Directions for Future Research

A possible limitation of the study is the translation of the measures from one minority

community to another. While some of the measures were created for use with all minorities

(expectation of rejection and everyday discrimination), others were originally designed for

use with sexual minority communities and needed to be translated specifically for this study

(outness and internalised stigma). The unique aspects of the autistic community may not have

been reflected in these measures, and, rather than changing the language of existing

measures, attempts need to be made to design new assessments of the unique qualities of the

autistic experience ‘from the ground up’.

Women were disproportionately represented in the study, which may decrease the

generalizability of these findings. However, this is something that frequently happens in

reverse, with males being overrepresented in autism research. The present sample could

reflect the frustration that autistic females feel at the usual exclusion from research

(Rynkiewicz et al. 2016; Shefcyk 2015). It is important to note that gender was controlled

for in all analyses in order to partially account for this limitation. Future research needs to

investigate the potential additive effects of multiple minority identities, such as being both

autistic and an ethnic minority to see whether there are effects related to ‘double

discrimination’ (as suggested by Grollman) (Grollman 2014). Similarly, other research

(Brown 2014) has found a gender difference in the effects of perceived social devaluation on
Minority Stress in Autistic Populations - 21

mental health (albeit of physical disability), which might explain gender affecting social

wellbeing in these results. A more in-depth analysis of that effect in a sample balanced for

gender is needed.

It may be important to understand the relationship that everyday discrimination has on

expectations of rejection and the place of labelling theory within the experiences of

discrimination and expectation of rejection. This would require longitudinal research to

understand the causal and cyclical relationships between these aspects of the minority stress

experience. Such research has the potential to provide a better understanding of minority

stress as the dynamic and situational model that it is theorized to be. Similarly, more research

could be done on the meaning of diagnosis to unpick the relationship it has with the autistic

person being labelled, and the societal context and perception of that label.

The prospects for future research stemming from this article are numerous. This

study found increased exposure to minority stress was associated with poorer wellbeing

within an autistic sample. By carrying out within-group analysis we can understand the

impact of the actual social stress (Schwartz & Meyer 2010a). It provides an opportunity to

understand the effect of exposure to minority stress on wellbeing in the autistic population.

Every individual within the group may experience the process of social stress to different

degrees. A between group study is also needed however, to fully test the full minority stress

model.

Finally, although the present study contributes to the intergration of disability and

stress literature (by demonstrating a clear relationship between minority stress and mental

health in the autistic population), further work is needed to examine resilience factors that

potentially buffer the negative effects of minority stress. Indeed, the minority stress model

points to the potential buffering effect community connectedness may have and stress, stigma

and disability literatures have been poorly integrated thus far (Brown 2010). Given the
Minority Stress in Autistic Populations - 22

increasing community identity emerging in members of the HFA/AS population, theorizing

and empirically testing the stress-ameliorating function of community connectedness for

autistic people will likely prove useful.

Summary and Conclusions

Although preliminary, this study represents the first to examine the applicability of

the minority stress model to the autistic community, demonstrating the unique and additive

impact of minority stress on mental health and wellbeing for members of the HFA/AS

population. More research is needed to replicate these findings and address questions of

causality in the association between minority stress and mental health for autistic individuals,

along with stress-ameliorating factors in the autistic population.

Minority Stress in Autistic Populations - 23

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Minority Stress in Autistic Populations - 35

Table 1: Sample demographics (N=111)

Characteristics Percent n
Gender
Female 72.1 82
Male 21.7 22
Other 6.2 7
Race/ethnicity
British White 45.0 50
Other White 39.6 44
Mixed multiple 7.2 8
Asian 1.8 2
Other 6.3 7
Official Diagnosis
Yes 70.3 78
No 29.7 33
Autism type
Asperger Syndrome 82.9 92
Classic Autism 10.8 12
Pervasive Development Disorder 6.3 7

Age in years M = 35.8 SD =11.

Minority Stress in Autistic Populations - 36

Table 2. Bivariate correlations, means, and standard deviations of independent and dependent variables c
1 2 3 4 5 6 7 8 9 10 11 12 13 14
1 Ethnicity 1
2 Gender -.03 1
3 Diagnosis status .06 .06 1
4 Stressful life events .05 .15 .06 1
5 Victimisation and .05 -.02 .06 .42*** 1
discrimination
6 Everyday -.09 -.03 .02 .27** .44** 1
discrimination
-.21*
7 Expectation of rejection -.11 -.15 .13 .27** .59*** 1
8 Outness scale -.02 .10 .46* .02 .03 .06 -.06 1
9 Behaviour concealment .06 -.02 .21* .29** .19* .185 .08 .34*** 1
of autism
10 Internalised stigma -.05 -.19* .11 .09 .19* .28** .18 .18 .42*** 1
11 Social wellbeing .14 -.13 .04 -.02 -.06 -.32** -.49*** -.13 -.12 -.06 1
12 Emotional wellbeing .13 .01 .18 -.06 -.01 -.37*** -.40*** -.01 -.09 -.24* .65*** 1
13 Psychological .14 -.07 .03 .01 -.01 -.35*** -.38*** -.22* -.08 -.18 .72*** .71*** 1
wellbeing
14 Psychological distress -.06 .06 -.23* .16 .11 .42*** .42*** .11 .10 .30** -.56*** -.71*** -.68*** 1
Mean 13.9 11.7 21.3 19.6 16.3 22.6 22.9 6.66 7.29 12.8 13.1
Standard deviation 2.07 3.72 6.82 6.41 4.40 8.12 6.98 5.94 4.44 7.89 5.20
c
** significant at <.001, **significant at <.01, *significant at <.05 (N=111)
Minority Stress in Autistic Populations - 37

Table 3. Minority stress predictors of mental health and wellbeing outcomes

Social Well-Being Emotional Well-Being Psychological Well-Being Psychological Distress (K6)

Variables β ESE df F β ESE df F β ESE df F β ESE df F
Ethnicity 0.01 0.06 1 0.04 0.10 0.06 1 2.60 0.08* 0.04 1 4.18 0.03 0.05 1 0.51
Gender 0.20* 0.09 1 4.76 0.03 0.08 1 0.17 0.06 0.07 1 0.87 0.02 0.05 1 0.28
Diagnosis status 0.07 0.06 1 1.45 0.19 0.10 1 4.01 0.04 0.05 1 0.67 0.14* 0.07 1 4.14
Stressful life events 0.18 0.13 4 2.06 -0.12 0.17 2 0.46 0.06 0.13 3 0.18 0.08 0.09 2 0.80
Victimisation and Discrimination 0.19 0.18 3 1.09 -0.20* 0.12 3 3.05 -.14* 0.07 2 3.93 -0.10 0.09 2 1.44
Everyday discrimination -0.22 0.21 5 1.12 -.24* 0.13 3 3.34 -.16* 0.10 4 2.56 0.23** 0.12 5 3.58
Expectation of rejection -.44*** 0.10 6 19.81 -.35*** 0.15 7 5.21 -.50*** 0.13 7 13.65 0.48*** 0.17 5 8.30
Outness scale -.20 0.14 5 1.98 -0.16 0.18 4 0.81 -.15* 0.09 6 2.63 0.15** 0.08 7 3.86
Physical concealment -.22* 0.15 8 2.24 0.19 0.17 6 1.15 0.02 0.17 2 0.02 -0.06 0.10 6 0.38
Internalised stigma 0.15 0.18 4 0.71 -.26* 0.16 3 2.77 -0.15 0.16 4 0.88 0.26** 0.13 6 4.09
Note: * p ≤0.05, ** p ≤0.01, *** p ≤0.001. Estimated standard error (ESE) calculated using bootstrap (1000). Lower scores in well-being reflect poorer well-being, higher distress scores reflect higher distress (N=111).
Minority Stress in Autistic Populations - 38