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Dissociation in Autism Spectrum Disorders: An Under-Recognized Symptom

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Dissociation in
Autism Spectrum Disorders:
An Under-Recognized Symptom
by Katherine E. Reuben, MPH, and Ayden Parish
Autism is a pervasive neurodevelopmental disorder primarily affecting social
communication, cognition, and sensory perception. Autistic individuals tend to struggle with
nonverbal communication, and many struggle with verbal language as well. Cognitive
differences can include highly focused interests and executive dysfunction, and autism often
co-occurs with attention deficit hyperactivity disorder (ADHD) or learning disabilities.
Recently, attention has begun turning towards the sensory differences reported by autistic
individuals, which may include experiencing certain sensations as overwhelming or even
painful, having difficulty processing streams of sensory information, and seeking out certain
sensations as particularly pleasurable or fascinating. Autism can be diagnosed at any age, and
indeed, with the rising awareness of autism over the past decade, many adults are now
finding themselves with a new label for their lifelong feelings of alienation and difference. As
a difference in neurology, autism cannot be "cured," and many autistic individuals find the
idea of curing their neurological differences undesirable and offensive. Nevertheless, autistic
traits tend to lead to difficulties and disability in engaging with society.
There are reasons to believe that dissociation is a common experience for individuals
with developmental disorders and particularly autism. Several risk factors for dissociation,
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such as anxiety and trauma, are known to be elevated in autistic populations. Further,
dissociative symptoms are reported by many autistic adults in online forums, social media,
and blogs. Preliminary research supports that dissociation is a common experience for autistic
individuals, especially those that have experienced trauma. This may have important
implications for working with the symptoms and coping mechanisms that autistic individuals
find relevant to their daily life.
This chapter draws particular attention to the lived experiences of autistic individuals.
Often, research on autistic individuals comes from a neurotypical that is, non-autistic
perspective. Not only are these perspectives less likely to be relevant to the lives of autistic
individuals, but they may prove actively stigmatizing by presenting a deficit-focused model of
autism. Additionally, autism research and narratives have historically focused primarily on the
impacts on and reactions of neurotypical family members. This chapter strives to prioritize
the perceptions and needs of autistic individuals in a respectful and collaborative manner. To
that end, both authors are themselves autistic, and the chapter highlights the narratives
provided by other autistic individuals collected as part of a survey on autism and dissociation.
Risk Factors
ANXIETY
Anxiety is common among autistic individuals, affecting between 11% to 84% (see
Steensel et al., 2011). 20% to 57% of autistic youth have been reported to have symptoms of
social anxiety specifically (see Wood & Gadow, 2010). The true prevalence is hard to estimate
because of a lack of measures validated for this population (Wood & Gadow, 2010) and
because some anxiety diagnoses require that an autistic individual have anxiety beyond what
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might be considered typical for the disorder. General, social, and separation anxiety are to an
extent typical features of autism (Steensel et al., 2011).
Anxiety is often associated with dissociation. Depersonalization and derealization are
common when individuals with social anxiety disorder are under acute social stress
(Schweden et al., 2016) and can be found alongside anxiety in both clinical and non-clinical
populations, especially in cases involving panic (Nestler et al., 2015). In fact, anxiety has been
theorized to be a key component of depersonalization and derealization (Holmes et al., 2005).
Regarding autism specifically, depersonalization and derealization have been found to
accompany anxiety in 18% of autistic youth (Storch et al., 2012).
TRAUMA AND POSTTRAUMATIC STRESS
Trauma is known to be a possible cause or risk factor for all possible expressions of
dissociation. Severe or chronic trauma, especially child abuse, is recognized as a major or even
primary cause of the most severe manifestations of dissociation, such as identity alteration
and dissociative amnesia. Dissociation immediately following trauma is common and predicts
later symptoms of posttraumatic stress, and many trauma-focused researchers view
posttraumatic flashbacks as inherently dissociative (Holmes et al., 2005; Spiegel et al., 2011;
Steinberg, 2000; Van der Hart et al., 2006). Likewise, dissociation significantly correlates with
posttraumatic stress in autistic adults (Reuben, 2022).
Traumatic experiences are unfortunately very common for autistic individuals. Much
research has been done on autistic social isolation, lack of caregiver attunement, and peer
rejection and harassment. However, autistic adults and especially children are also at an
increased risk of neglect, abuse, and assault, including from parents, other family members,
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disability caregivers, peers, intimate partners, and unknown individuals (Baladerian et al.,
2013). This is especially concerning because interpersonal trauma is a better predictor of
posttraumatic stress than traumas such as natural disasters or accidents (Breire et al., 2016;
Lilly & Valdez, 2016) and is a particularly severe risk factor for dissociation (Holmes et al.,
2005; Spiegel et al., 2011; Steinberg, 2000; Van der Hart et al., 2006). This correlation between
interpersonal victimization and dissociation has also been found in autistic adults (Reuben et
al., 2021).
Disabled individuals in general experience higher rates of interpersonal trauma
(Baladerian et al., 2013; Cohen et al., 2006; Hughes et al., 2011; Mitra et al., 2011; Roberts et
al., 2015; Smith, 2008). Child maltreatment may be increased because of high levels of
parental stress, frustration with the child’s disability, or financial strain. Peer rejection and
harassment can occur in response to cultural disability stigma. As an adult, the disabled
individual may be at higher risk because of their lower socioeconomic status and reduced
independence. Predatory individuals may also perceive the disabled individual as more
vulnerable and therefore an appealing target (Fisher et al., 2013; Hoover & Kaufman, 2018;
McDonnell et al., 2019; Pfeffer, 2016; Roberts et al., 2015; Weiss & Fardella, 2018).
Autistic individuals face additional risks. Due to differences in social communication,
autistic individuals often have a difficult time forming close friendships which might otherwise
be protective. They may also struggle to recognize when a predator means them harm.
Intellectual disability or uneven cognitive profiles, which are common in autism, may worsen
difficulties recognizing ill intentions and increase perceived vulnerability. Other emotional or
behavioral challenges may also increase the individual’s alienation from potential sources of
protection, perceived vulnerability, and likelihood of ending up in risky situations. This is true
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even for individuals who do not meet the full criteria for an autism spectrum disorder (ASD)
diagnosis but have autistic traits or other associated risk factors (Chan et al., 2018; Fisher et
al., 2013; Haruvi-Lamdan et al., 2020; Hoover et al., 2018; Holtmann et al., 2007; Kerns et al.,
2015; McDonnell et al., 2019; Paul et al., 2018; Roberts et al., 2015; Rumball et al., 2020;
Schroeder et al., 2014; Weiss & Fardella, 2018).
The types of interpersonal trauma that autistic individuals are vulnerable to are varied.
44%97.8% of autistic children are bullied; contrary to common perception, this victimization
may be complex and involve prolonged harassment, property theft or destruction, or group
assault. It is also commonly repeated, with almost half of autistic people reporting being
bullied 10 or more times (Baladerian et al., 2013; Chan et al., 2018; Griffiths et al., 2019;
Hellstrom, 2019; Maïano et al., 2016; Paul et al., 2018; Rose et al., 2015; Schroeder et al.,
2014; Weiss & Fardella, 2018). Autistic children are more likely to have reported and
substantiated maltreatment (50.4%80%) compared to neurotypical children, especially
autistic children with co-occurring intellectual disability. They have been found to have higher
rates of physical abuse (18.5%57.8%), emotional or verbal abuse (62.2%79%), and sexual
abuse (2.8%30%) (Baladerian et al., 2013; Chan et al., 2018; Gotby et al., 2018; Griffiths et
al., 2019; Hellstrom, 2019; Mandell et al., 2005; McDonnell et al., 2019; Pfeffer, 2016).
Conventional crime victimization is also a problem for many autistic children (56.4%90.9%),
as is witnessing violence (30%) (Hellstrom, 2019; Weiss & Fardella, 2018).
Autistic adults also report high rates of sexual violence (24.4%78%), physical assault
(34%56%), bullying (60%70%), and emotional abuse from partners (39%) (Brown-Lavoie et
al., 2014; Griffiths et al., 2019; Haruvi-Lamdan et al., 2020; Reuben et al., 2021; Weiss &
Fardella, 2018). In particular, Brown-Lavoie et al.’s (2014) study of autistic adults found that
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they were 2 to 3 times more likely to report unwanted sexual contact, sexual coercion, and
rape compared to neurotypical adults. Another study by L. Platt et al. (2015) surveyed 350
developmentally disabled adults and found that 63.7% of men and 68.2% of women reported
having experienced abuse as an adult. Reuben et al. (2021) also found that autistic women
and gender minorities reported especially high rates of sexual victimization.
Because of the high rates of trauma that autistic individuals experience, it should be
no surprise that they also describe high rates of posttraumatic stress. Studies have found that
16% to 19% of autistic adults report being diagnosed with posttraumatic stress disorder
(PTSD; Griffiths et al., 2019; Reuben et al., 2021), and between 32% and 60% of autistic adults
meet criteria for PTSD when screened (Haruvi-Lamdan et al., 2020; Reuben et al., 2021;
Rumball et al., 2020). Autistic children have also been found to have more severe
posttraumatic stress compared to neurotypical children (Paul et al., 2018; Mehtar &
Mukaddes, 2011), although this is not always the case for studies that rely on parent reports
(see Brenner et al., 2018).
Even at non-clinical levels, autistic traits predict posttraumatic stress following a
trauma (Haruvi-Lamdan et al., 2019, 2020; Roberts et al., 2015). The same social
communication differences that make autistic individuals vulnerable to interpersonal trauma
can also leave them without support to assist with their healing. Cognitive differences can
make the trauma harder to understand, and mental health and emotional regulation
difficulties can also exacerbate posttraumatic stress (Chan et al., 2018; Haruvi-Lamdan et al.,
2020; Hoover et al., 2018; Holtmann et al., 2007; Kerns et al., 2015; McDonnell et al., 2019;
Paul et al., 2018; Roberts et al., 2015; Rumball et al., 2020; Schroeder et al., 2014; Weiss &
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Fardella, 2018). However, this is an under-recognized connection, and PTSD is not often
assessed for in autistic individuals (Kerns et al., 2015; Kildahl et al., 2019).
DISABILITY STIGMA AND SHAME
Trauma is not the only risk factor that can arise from societal responses to autism.
While threats to survival and wellbeing are important, there are other more common (and
commonly overlooked) experiences that can also heavily shape the autistic individual’s view
of the world and themself. Disability stigma is one such experience that can be communicated
either independently or as part of traumatic experiences (e.g., bullying that is focused on an
individual’s autism). An important outcome of disability stigma is shame.
Unlike fear, which may result from violence and threats of harm, shame is strongly
associated with degradation, boundary violations, and social isolation. Individuals may feel
shame not only for what others have done to them but also for who they are. Shame, along
with dissociation, is a key symptom of complex PTSD, which results from interpersonal trauma
(Dorahy et al., 2013; Herman, 2011; Van der Hart et al., 2006), and both shame and
dissociation are predictors of posttraumatic stress severity. Additionally, individuals with
clinical levels of dissociation have more trait and state shame (Dorahy et al., 2013).
In addition to reducing the pain and disruption associated with posttraumatic stress
itself, dissociation has also been theorized to reduce posttraumatic shame. However,
dissociation may additionally co-occur with shame to shift an individual’s focus away from
traumatic events (e.g., to direct attention and blame internally). This can help to preserve
functioning, especially when the trauma is high in betrayal and the relationship with the
perpetrator is one that the individual needs to preserve (M. G. Platt et al., 2017). Although
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not necessarily traumatic, disability stigma may create a similar incentive to focus inward and
dissociate, particularly when the shame originates from caregivers.
Overt and Covert Discrimination. A majority of autistic individuals experience
bullying during childhood and adulthood. Some of this bullying is likely focused on the traits
and behaviors of the autistic individual, while some of it may be motivated by the ASD
diagnosis itself. Aubé et al. (2021) found that when shown short videos of autistic children
and typically developing children, elementary school children rated the autistic children more
negatively and wanted to interact with them less. While this effect decreased in higher
grades, the desire to avoid autistic children as measured through an implicit attitudes task did
not, which the authors thought might be a particular risk for anti-autistic microaggressions.
In addition to peers, autistic individuals may face discrimination from caregivers,
teachers, medical professionals, and even strangers. Griffiths et al. (2019) report on a variety
of forms of discrimination experienced by professionally diagnosed autistic individuals,
including schools refusing requested accommodations, employers overlooking the individual
for employment or promotions despite the individual’s qualifications and training, and
acquaintances tricking or pressuring the individual into breaking the law or giving someone
else money or possessions. While some of these experiences may have happened regardless
of the individual’s diagnostic status (i.e., may have been motivated by perceived traits of the
autistic individual as opposed to knowledge of the individual’s ASD diagnosis), others may
have been directly motivated by stigma.
Laina Eartharcher, an autistic woman writing under a pseudonym, has used her blog
to discuss experiences that she and others have had in which their competence was
questioned or others talked down to them only after their autism was disclosed. One of her
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blog posts also discussed how autism is often described with pathologizing language, such as
calling it a “disease” or “devastating,” which can lead autistic individuals to perceive that
others view them as or that they are broken or defective. Comments under the post
revealed that many autistic adults related to her statements and shared similar experiences
(Eartharcher, 2017).
The Double Bind of Diagnosis. There is a surprising lack of literature on the impact
of an ASD diagnosis for the affected individual. The few existing studies on this topic highlight
immediate reactions of relief, anger, fear, and denial. On one hand, being diagnosed can
provide an explanation for one’s experiences and therefore reduce confusion and shame.
Understanding oneself as autistic provides a path for self-acceptance, whereas a lack of
diagnosis leaves room for negative self-assessments such as being “weird,” “flawed,” “failed,”
or somehow wrong. Similarly, a diagnosis may lead to increased support and understanding
from family members, teachers, and peers, and having a diagnosis provides the opportunity
to access necessary services and accommodations. Late-diagnosed adults in particular, who
likely sought out assessment based on their own suspicions, may experience the diagnosis as
a relief (Arnold et al., 2020; Humphrey & Lewis, 2008; Jones, 2001; Powell & Acker, 2015;
Reed & Osborne, 2012; Smith et al., 2018).
On the other hand, stigma associated with an autism diagnosis can lead to negative
feelings about oneself and the world, particularly if it leads to rejection by neurotypical loved
ones and professionals (Arnold et al., 2020). How others react to one’s autism is important to
self-conception and acceptance. One study of 20 autistic youth found that several had
negative perceptions of autism prior to their diagnosis, but others developed negative
perceptions over time because of bullying, ostracism, or being treated differently by teachers
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(Humphrey & Lewis, 2008). Concerns of stigma can lead to disidentification with the diagnosis
or attempting to hide it from others. Conversely, peer support and acceptance can lead to a
positive autistic identity (Humphrey & Lewis, 2008; Smith et al., 2018).
Unfortunately, as commonly highlighted by autistic individuals, messages about
autism come from many sources including professionals, family members, peers, media,
and educational resources and these messages are often very negative (Eartharcher, 2017).
Worse, these messages are often aimed at the family of autistic individuals and rarely
acknowledge the views or needs of autistic individuals themselves. For example, one woman
described a book titled Living with Autism that was in fact aimed at neurotypical parents
which made autism seem like an “unwanted houseguest.” She described how she thought
that the book “personified Autism… [the autistic child] has become the ‘disorder’ and is
entirely identified by it” (“Little Sparrow”, 2017). An ASD diagnosis may lead to identifying
with and being shamed by stigma towards autism, but little is known about how this impacts
autistic individuals in the long term.
More research exists on caregiver reactions to the diagnosis and highlights feelings of
frustration with the diagnostic process, fears of stigma against themselves and their children,
and fears about how autism might impact their family (Smith et al., 2018). Only half of
caregivers are satisfied with their child’s diagnostic process and the subsequent support and
information provided, and the associated caregiving stress can negatively impact the autistic
child (Reed & Osborne, 2012). In some cases, caregivers may delay disclosing the ASD
diagnosis to their autistic child, which can contribute to denial and further shame surrounding
being autistic (Smith et al., 2018; Jones, 2001). A stumbling block for both caregivers and
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autistic individuals is coming to terms with autism being lifelong (Powell & Acker, 2015; Smith
et al., 2018).
Even in the absence of a cure, many autistic people and their caregivers desire
treatment for the most difficult or distressing symptoms (Arnold et al., 2020; Humphrey &
Lewis, 2008; Jones, 2001; Powell & Acker, 2015; Reed & Osborne, 2012; Smith et al., 2018). A
late diagnosis means years or decades without support, and many struggle to get the help
that they need even with a diagnosis (Arnold et al., 2020; Powell & Acker, 2015). This, too,
may contribute to self-alienation and dissociation. However, an early diagnosis of ASD may
lead to the child undergoing applied behavioral analysis (ABA), which many autistic people
have reported contributed to their sense of shame, self-alienation, and self-loathing.
Although ABA can be combined with other therapies to help autistic individuals cope with
stressors without resorting to potentially dangerous behaviors, it is often used to train autistic
children to look more “normal” (i.e., neurotypical). This involves using intense behavioral
conditioning to discourage unconventional but harmless autistic traits as well as to encourage
behaviors that society privileges but which may be experienced as extremely aversive or even
painful to the child. Some autism researchers have theorized that ABA might interfere with
identity formation because of tension between the conditioning and the individual’s natural
self. An emphasis on compliance may also leave the autistic child unable to say no and
vulnerable to future abuse (Kupferstein, 2018; McGill & Robinson, 2020; Wilkenfeld &
McCarthy, 2020).
Masking. Stigma and internalized shame cause many autistic individuals to try to
camouflage or “mask” their autistic traits. They may copy neurotypical individuals’ speech,
dress, body language, and facial expressions as well as try to hide their reactions to
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overwhelming or aversive sensory stimuli in an attempt to be accepted by others. Masking
can contribute to feeling disconnected from or confused about one’s true self. It is exhausting
and may require engaging in dangerous behaviors (e.g., disordered eating or substance
misuse) to maintain. At worst, it may result in suicidality (Bradley et al., 2021; Miller et al.,
2021). Masking may be closely related to dissociation for some autistic individuals.
Autistic Burnout. Discrimination and attempts to mask can contribute to “autistic
burnout,” an experience often described by autistic adults in which an accumulation of life
stressors and insufficient support lead to chronic exhaustion, loss of skills, and reduced
tolerance to sensory stimuli. A key precursor of autistic burnout seems to include
unattainable expectations placed on the autistic individual, such as demands that the autistic
individual camouflage or mask their autism, expose themself to aversive sensory stimuli, or
engage in unwanted amounts of socialization. All of these may be driven by society’s refusal
to respect the needs of autistic people and the subsequent internalization of the idea that the
autistic person is not allowed to maintain boundaries (Raymaker et al., 2020).
Many autistic people report that a lack of ability to maintain previous levels of
functioning induces shame (Raymaker et al., 2020). This may be associated with dissociation,
which may in turn worsen burnout by making it difficult for the individual to connect with and
respond to their emotional and physiological needs. On the other hand, dissociation may also
be a coping mechanism utilized by some autistic individuals to create distance from intense
feelings and overstimulation that could otherwise lead to a loss of functioning.
Attachment Disruptions. Autistic traits may be recognized as early as 1218 months
(Szatmari et al., 2016), and severity of autism symptoms predicts lower attachment security,
fewer prosocial responses to caregivers, and poorer parent-child interactions. Secure
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attachment, which 47% of autistic children do achieve, is conversely associated with improved
behavior. Both parental sensitivity and insight into their child’s needs promote secure
attachment. Unfortunately, not only can autism make it more difficult for the child to
understand their parent, but the child’s atypical communication can make it harder for the
parent to understand and respond to their child. Additionally, parents may feel disconnected
from their autistic child due to the child’s difficulties with eye contact, conversation, and
physical contact as well as due to the stress of raising a disabled child (Teague et al., 2017).
Parents of autistic children often face discrimination and exclusion by their
communities (Gray, 2020; Kinnear et al., 2016; Liao et al., 2019). Additionally, a lack of
sufficient support and resources for coping with their child’s symptoms can lead to high levels
of stress and depression (Zaidman-Zait et al., 2017). These stressors can increase the
perceived difficulty of parenting, reduce parenting quality, increase child behavioral
problems, and potentially interfere with the parent-child relationship (Kinnear et al., 2016;
Osborne & Reed, 2010; Zaidman-Zait et al., 2017). This is troubling because even subtle
emotional unavailability and attachment disruptions as early as infanthood are important
predictors of dissociation later in life (Lyons-Ruth et al., 2009).
Unfortunately, the disconnection between parent and child may not remain subtle.
When increased parental stress is combined with anti-autistic stigma, this may lead to
parental embarrassment, social withdrawal, and associating the child with public shaming, all
of which the child might internalize. The child might be further negatively affected if the
parent expresses covert resentment or openly blames the child for making their life more
difficult. Given the high rates of maltreatment experienced by autistic children, it is likely that
for many parents, these stressors lead to a cycle of the parent taking out their frustration on
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their autistic child, the child’s behavioral problems escalating as a result, and the parent
responding with more frustration and maltreatment. This cycle might be very hard for the
family to break without external help, which is generally not available.
ABSORPTION AND FANTASY PRONENESS
Absorption refers to one’s ability to become “absorbed” in fantasy and imagination.
While it is unclear to what extent absorption may itself be considered an inherently
dissociative experience (see Holmes et al., 2004), studies point towards an association
between absorption and other more centrally dissociative factors, such as
compartmentalization, as well as with psychopathology more generally (Levin & Spei, 2004;
Soffer-Dudek et al., 2015). Fantasy proneness, a related construct, refers to the trait of being
drawn to immersive inner fantasy, with highly fantasy prone individuals being inclined
towards spending long portions of time engaging in daydreaming or other fantasy-based
activities like roleplaying. This, too, shows some correlation with dissociative experiences
more generally (Merckelbach et al., 2021).
The stereotypical image of autism is one of a “genius without imagination” (Quirici,
2015). That is, autistic individuals have been typically viewed as having a somehow deficient
capacity for imagination and creativity. However, attention to autistic individuals’ own
narratives uncovers the important role of fantasy and imagination for many. In her study of a
summer camp for autistic youth, Fein (2020) argues that these youth identified strongly with
fictional characters from literature, video games, and their own creation, to the extent that
these fantasies organized how they related socially to one another. These fantasy worlds can
further prove deeply personally meaningful for the individual (Visuri, 2018). It may be the
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case, then, that an interest in fantasy could mediate a relationship between autism and
dissociation. Early research also indicates that autistic traits may be specifically associated
with pathological absorption in the form of maladaptive daydreaming (West et al., 2020).
Previous Research
Despite these reasons to believe that autistic individuals are at a higher risk of
experiencing dissociation, there is minimal existing research on this topic. Three studies have
examined dissociation symptoms in autistic youth, and two have surveyed autistic adults. Two
of the youth studies found that somatic dissociation is elevated in autistic children (Mahan &
Matson, 2011; Sukhodolsky et al., 2008). 18% of autistic youth were also found to experience
dissociation as a response to anxiety (Storch et al., 2012).
Zdankiewicz-Ścigała et al. (2021) surveyed 79 autistic adults and 126 neurotypical
adults. They found that for both groups, stronger autonomic reactivity predicted higher
somatoform dissociation, and alexithymia (specifically difficulties identifying and describing
feelings, but not a bias for external focus) mediated this relationship. This relationship was
stronger for autistic individuals, who additionally reported higher somatization.
Reuben et al. (2021) surveyed 687 autistic adults and found that 94% had at least one
clinically elevated scale on the multiscale dissociation inventory. Emotional disengagement
was the most commonly endorsed symptom, affecting 85% of participants. This was followed
by depersonalization (72%), emotional constriction (60%), derealization (59%), and memory-
related dissociation (53%). Identity disturbances were least common but still endorsed by
26% of participants. Additionally, 32% of participants scored above 35 on the 20-item
somatoform dissociation questionnaire.
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Dissociation was more severe in autistic adults who had experienced physical assault,
sexual assault, or another unwanted or uncomfortable sexual experience, which were
endorsed by 72% of the sample. 91% of the autistic adults reported having directly
experienced any kind of trauma, for an average of 3.54 unique types of traumas. Additionally,
44% of the adults screened positive for PTSD, including half of those who had experienced
assault or sexual victimization. Using the same sample, Reuben (2022) found that autistic
adults who met criteria for PTSD had significantly elevated dissociation overall and elevated
scores for each unique type of dissociation assessed. These findings support that high rates
of trauma exposure and interpersonal victimization increase the risk of dissociation in autistic
adults.
Autistic Descriptions of Dissociation
In the survey from Reuben et al. (2021), 351 autistic adults provided further narratives
about their experiences of dissociation and/or their understanding of its potential causes or
correlates. The participants were given descriptions of different types of dissociation and then
specifically asked how they felt that their experiences of dissociation might be influenced by
or interact with their autism, other neurodevelopmental disorder symptoms, anxiety, or
trauma history. They were also provided the opportunity to share anything else that they
wanted known about their dissociative experiences. These responses are still being analyzed
and will be presented in more detail in a future study; however, a preliminary analysis is
possible and highlights several key areas of interest.
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EXPERIENCES OF DISSOCIATION
Firstly, many individuals described some set of experiences that are very similar to
current understandings of dissociation’s phenomenology. That is, these autistic adults indeed
reported not only in standardized measures but in prose the full range of dissociative
experiences, from depersonalization and derealization to somatoform dissociation and
identity alteration. For example, one individual reports:
“It just feels like I withdraw from experiencing the outer shell of my body…
and retreat into the inside of my body that is unaffected by the outside world.
Like a little room behind my eyes, or curling up behind my heart. And I push
away too strong sensations or emotions or thoughts. I use my brain to put a wall
between myself and the harm. This happens automatically and I really struggle
with understanding how I feel.” (Cisgender woman, age range 2225)
Others provided examples of specific, acute dissociative episodes:
“I just recently, within the month, spoke at a national conference about suicide
and I remember the beginning of my speech, my hands looking like they
belonged to someone else- and can’t remember anything after that, except for
pieces here and there of anything the rest of that day, that night and all the next
day until evening. I am told my speech was fine, I took a bus tour, had ice cream
with people, walked back to my hotel in unfamiliar streets, took a taxi to the
airport, had a lay-over and made it back to my children safely and that’s when I
can remember again.” (Cisgender woman, older than 51)
That is, dissociative experiences in autistic individuals are not radically different from
neurotypical experiences of dissociation. This may have important implications for
understanding the etiology and treatment of dissociation for autistic individuals.
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Nevertheless, responses spoke of a number of particularities to autistic dissociation, namely
the effect of autism in trauma and victimization, the influence of conflicting social
expectations, coping with sensory and/or emotional overstimulation, and possible overlaps
with typical autistic symptoms such as executive dysfunction and face blindness.
CORRELATES OF DISSOCIATION
Dissociation as a Response to Trauma. In line with previous research on
dissociation, many respondents connected their dissociation to various kinds of trauma.
“I dissociated near-constantly during a lot of my incredibly traumatic childhood.
It's hard for me to even recognize it sometimes because it feels so normal that
sometimes I would just completely blank out and not be able to think or
remember where I am or what I'm supposed to be doing or how to do basic
things. It's like moving through gel, like my brain doesn't work right.”
(Cisgender woman, age range 26-30)
Notably, several provided their understandings of how their autism led to or made
them more vulnerable to victimization:
“I feel that having undiagnosed ASD made me more vulnerable to domestic
abuse, which in turn led to dissociative amnesia and identity confusion.
Constantly being bamboozled in social situations and trying to adapt myself to
fit in has led to identity confusion and alteration. It all ties together - autistic
traits lead to me getting into traumatic situations, trying to repress/ change who
I am, getting confused... and the situations are more difficult because I'm
autistic…” (Cisgender woman, age range 2225)
KATHERINE E. REUBEN, MPH, AND AYDEN PARISH
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Some further described dealing with social isolation, discrimination, and stigma as
forms of trauma that led to their dissociative symptoms:
“Strang[e]ly, the big trauma that I've had doesn't play in as much as the every
day little traumas. The isolation of being a [neurodevelopmentally disabled]
person. The little times I know I did wrong socially, but didn't have the ability
to do right. The times I've messed up at work despite my putting 110% into
being correct. Those are the situations that haunt me and make me "flash back"
or "go into the bubble.”” (Cisgender woman, age range 4145)
Dissociation as a Response to Social Expectations. Dealing with stigma and
discrimination whether understood as traumatic or not often leads autistic individuals to
put great effort into masking their autistic traits. Further, autistic difficulties in understanding
social norms can make interaction with others feel confusing and unpredictable. Responses
attributed a range of dissociative symptomatology to these social difficulties. For example,
the need to suppress one’s natural behaviors and consciously present a “false front” was
highlighted as a particularly potent cause of depersonalization and derealization:
“I feel like I have to ‘fake’ a lot to appear normal’, and interacting with humans
is a role playing game. This probably contributes to the feeling that none of this
is real…” (Gender unknown, age range 3135)
“The real person I a[m], was unacceptable and punished in many ways from
many sources so I had to learn to put on appropriate personalities, retreat into
myself and watch myself “behaving appropriately” as if it was a play that I was
putting on... Most of the dissociative symptoms and post-traumatic symptoms
I’ve experienced from childhood stem from my autism being unacceptable, and
further traumatic experiences (domestic violence, unwanted sexual behaviour)
DISSOCIATION IN AUTISM SPECTRUM DISORDERS: AN UNDER-RECOGNIZED SYMPTOM
170
arose because I had learned to dissociate from my real feelings and needs and
behave how other people found acceptable. Autism, and a lack of knowledge or
tolerance of it, is central to my experiences with dissociation.” (Cisgender
woman, age range 3135)
Others described feelings of identity confusion and even identity alteration due to
never being allowed to connect with their “true self” or due to constructing “personalities”
to match others’ demands:
“I have spent many decades working hard to mask my odd behavior. This may
account for some of the [dissociated] experience[s] I have had and still have---
my simulated / emulated personality impinging on my authentic one.”
(Cisgender man, age range 51+)
“I believe my alters experience my autism to different degrees and in different
regards. For instance, one alter may be nonverbal and stim by chewing and
pulling hair and rocking, while another alter may be very charismatic,
abnormally intelligent, and only do small stims (like playing with a spinner
ring). Usually, I switch whenever a specific alter seems better-fitted to a task,
so one alter might be great for managing emotional distress, while another one
is better for socializing with peers, while another one is better for socializing
with family." (Trans man, age range 2225)
Of note, similar experiences with identity confusion and alteration were described by Polly
Samuel (“Donna Williams”), a well-known autistic advocate who was diagnosed with
dissociative identity disorder related to the traumas she experienced as part of and in
response to her autism (Samuel, 2012).
KATHERINE E. REUBEN, MPH, AND AYDEN PARISH
171
Dissociation as a Response to Sensory and Emotional Overstimulation. Autism is
associated with sensory processing differences such that the world is experienced by many as
overwhelmingly bright, loud, or otherwise chaotic. Emotions may also be felt as particularly
intense, and many autistic individuals struggle with emotion regulation (Mazefsky et al.,
2013). Autistic individuals describe self-stimulatory behaviors, such as rocking and pacing, as
ways to control and cope with such overwhelming sensations. Survey responses suggest that
dissociation may be another often maladaptive coping strategy:
“Whenever I am in sensory overload it feels like my bodily functions like
walking, reacting to people in a crowd, watching out for objects in the way while
walking are sep[a]rated from my personality so that I don't have to make
conscious decisions about it because my working memory cannot process these
AND the sensory overload. I feel dismember[ed] from my body then and can
have normal thoughts while my body functions unconsciously… I have a lot of
switches in perception of dream-like states, become unaware of my
surroundings in dissociative hyperfocus situation, I forget to eat and drink and
become overly self-absorbed.” (Nonbinary, age range 2630)
Certain respondents further pointed towards the derealizing effects of having
different sensory experiences than those around them especially when those experiences
were then invalidated by others:
“The world is too much and at the same time distant. I think I dissociate to cope
with the "too much" part. Also I've been denied my experiences a lot ("it can't
feel that bad") so it feels like I feel things that can't be real since nobody believes
them.” (Cisgender man, age range 3640)
DISSOCIATION IN AUTISM SPECTRUM DISORDERS: AN UNDER-RECOGNIZED SYMPTOM
172
“I feel like I'm stuck inside a body that doesn't belong to me and I struggle to
recognise as mine and I want to learn how to embody it properly, but the fact
that people won't explain to me how to use it to communicate… I have no idea
what signals this body is sending out to people.” (Nonbinary, age range 3135)
Dissociation as Overlapping with Autistic Traits. While the survey asked
participants to reflect on the influence autism had on one’s dissociation, some respondents
seemed to struggle with disentangling these two concepts. That is, some described ways in
which autistic and dissociative symptoms seemed to overlap and complicate one another. For
example, difficulties in shifting focus between activities are understood as a symptom of
executive dysfunction, yet one respondent suggested a dissociative tint to their struggles:
“I never really thought about this until reading the "staring off into space without
thinking" item in this questionnaire earlier. At times when I'm preparing to
transition to doing some other activity, such as after waking up or when
returning to my work from a break, I sometimes do that for a minute or two. I
never considered that it might have something to do with [Asperger’s].”
(Gender unknown, age range 2225)
Another described face blindness (an inability to recognize faces) as interwoven with their
experiences of depersonalization:
“I think my issues with depersonalization are complicated by the face blindness
issues I have--I can't recognize my face to start with, and when I'm [dissociating]
there's an added layer of su[r]reality layered over it that can make trying to look
in the mirror difficult. When looking at other people it's sort of funny--people's
face to body p[ro]portions swim in and out and look cartoonish.” (Nonbinary,
age range 3135)
KATHERINE E. REUBEN, MPH, AND AYDEN PARISH
173
Given the lack of research on dissociation in autistic individuals, it is difficult to say
how exactly these experiences should be classified. Further research into this topic will no
doubt uncover further intersections and elucidate the potential dissociative mechanisms
behind these individuals’ experiences.
Clinical Implications
Dissociation is common globally, especially among psychiatric patients (Cattell &
Cattell, 1974). Specific dissociative disorders can be found in 8.6% to 18.3% of individuals
within the general population (Martinez-Taboas et al., 2013). Somatoform dissociation has
been found to be especially common (Sar, 2006). However, outside of contexts in which
professionals have been specifically trained to recognize and treat dissociation, it is often
missed. A lack of awareness about dissociation in the general population, lack of professional
education about dissociation, and high rates of comorbidity with other mental health
pathology all pose major barriers to the diagnosis and treatment of dissociation (Spiegel et
al., 2011; Steinberg, 2000).
Barriers to the recognition of dissociation may be especially likely for autistic
individuals. Autism can interfere with one’s awareness of and ability to communicate about
internal states and can cause a variety of more recognizable symptoms which clinicians may
be more inclined to notice and treat. These have been recognized as barriers to diagnosing
PTSD (Kerns et al., 2015; Reuben, 2022). Additionally, Baladerian et al. (2013) found that only
55.4% of their autistic sample reported the abuse they experienced, with even lower rates of
reporting among survivors of sexual or physical violence. Although research supports that
autism increases the risk for interpersonal and complex victimizations the traumas most
DISSOCIATION IN AUTISM SPECTRUM DISORDERS: AN UNDER-RECOGNIZED SYMPTOM
174
closely associated with dissociation this is under-recognized in practice. Finally, the lack of
knowledge of dissociation in autism may itself contribute to dissociation being overlooked in
this population, as this potential comorbidity may not even occur to clinicians.
Unfortunately, due to the lack of existing studies on dissociation in autism, it is
unknown what the most effective treatments are. At the moment, the most important clinical
recommendation is that providers who serve autistic individuals should increase screening for
trauma, posttraumatic stress, and dissociation. Additionally, trauma professionals in turn
should consider screening more clients for autism. Only once a sufficient number of
dissociative autistic individuals have been identified in clinical contexts can treatment best-
practices be established. Until then, recognition of the autistic individual’s dissociative
experiences may in and of itself be helpful through providing space for the individual to be
heard and potentially learn other ways to cope with their stressful and traumatic experiences.
KATHERINE E. REUBEN, MPH, AND AYDEN PARISH
175
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... While research has extensively examined dissociative disorders in general population, focused studies of dissociative disorders within the autistic population are comparatively scarce. Our review of the literature revealed a small collection of case reports (Libdeh et al., 2022;Rinaldi et al., 2019;Tong et al., 2021) and a modest number of research studies (Reuben & Parish, 2022;Reuben et al., 2021;Storch et al., 2012) focusing on dissociative symptoms in autistic individuals. A validity and reliability study of an anxiety scale conducted by Storch and colleagues (2012) with 72 autistic children and adolescents reported that 18% of the participants had symptoms of depersonalization (i.e., experiences of detachment from one's own mind, feelings, or physical body) and derealization (i.e., experiences of the external world being unreal, foreign, distant, or dreamlike) (Storch et al., 2012). ...
... That review referred to dissociation in ASD as an under-recognized symptom and emphasized the need for further research into the causes, effects, and classification of dissociation among individuals on the autism spectrum (K. Reuben & Parish, 2022). ...
... The existing literature has primarily focused on the traumatic experiences, trauma perceptions, and trauma-related disorders of the autistic individuals but provides limited information regarding their dissociative symptoms (Connor Morrow Kerns et al., 2015;Ng-Cordell et al., 2022;Reuben & Parish, 2022). Taking all these factors into consideration, there arises a need to research dissociative disorders in ASD. ...
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Despite exposure to trauma and adverse life events being frequently reported in Autism Spectrum Disorder (ASD), few studies have examined the relationship between these factors and dissociative symptoms in the autistic population. The aim of the study is to investigate symptoms of dissociation in autistic adolescents, and to explore factors that could be associated with dissociative symptoms in ASD. This cross-sectional study involved 59 autistic adolescents between 12 and 18 years old, with the mean age of 14.3 ± 1.8. Dissociation, autism characteristics, childhood traumas, peer bullying, and Post-Traumatic Stress Disorder (PTSD) symptoms were assessed using the Adolescent Dissociative Experiences Scale (ADES), the Childhood Autism Rating Scale (CARS), the Childhood Trauma Questionnaire (CTQ), the Nine-Item Child-Adolescent Bullying Screen (CABS-9), and the Child Posttraumatic Stress Reaction Index (CPTS-RI), respectively. Results from the ADES revealed that 12.5% of the participants scored above the threshold for dissociative disorders. In the linear regression model constructed to evaluate factors associated with dissociative symptoms, an increase in dissociative symptoms was statistically significantly associated with an increase in the total CTQ score (p = 0.002) and age (p = 0.006). The findings of the study indicate that dissociative symptoms may occur in autistic adolescents. It is suggested that dissociative symptoms observed in autistic adolescents may particularly be associated with childhood traumas and increasing age. Further research into dissociative symptoms in ASD is warranted, requiring larger sample sizes, specialized measurement scales, and structured interviews.
... Учитывая гипотезу о том, что в клинической картине заболевания Арины (Миши) были представлены гистрионические симптомы в виде эпатажного поведения, склонности к псевдологии и нарциссическому поведению, интерес представляют публикации, посвященные коморбидности РАС с диссоциативными расстройствами [20][21][22]. По мнению K.E. Reuben, A. Parish [20], диссоциации в рамках РАС часто презентуют себя в виде погруженности в патологическое фантазирование, что подтверждают исследования и российских психиатров [23]. ...
... По мнению K.E. Reuben, A. Parish [20], диссоциации в рамках РАС часто презентуют себя в виде погруженности в патологическое фантазирование, что подтверждают исследования и российских психиатров [23]. Развернутых и синдромально завершенных диссоциативных (конверсионных) расстройств при РАС не описано. ...
Article
The article presents the case of a girl, Arina, who, based on psychological self-examination, discovered that she had autism spectrum disorder and insisted on receiving an official psychiatric diagnosis. She reported that for many years she had been engaged in masking – hiding existing communication disorders, as a result of which she developed emotional dysregulation and “autistic burnout.” In addition, she was dissatisfied with her name and asked those around her to call her Misha, but in the feminine gender. Misha's behavior was disharmonious; she was prone to conflict due to a misunderstanding of the non-verbal reactions of her interlocutors. An analysis of the literature on the issue of comorbidity of autism spectrum disorders was carried out. It was concluded that the Asperger syndrome identified in the patient was not combined with clearly defined comorbid mental and behavioral disorders, but with abortifacient elements of certain psychopathological symptoms. It is assumed that comorbid disorders did not develop in Misha in an expanded form precisely because of the presence of specific autistic traits that made it difficult to develop a full picture of any other disorders.
... If that is ineffective, you can withdraw from your experience, such as by building up a "thick skin" of numbing and low-level dissociation in your nervous system (cf. Reuben & Parish, 2022). ...
... However, in the case of our participants, these were mistaken for dissociative episodes, providing confirmatory bias to support BPD/EUPD diagnoses. This has also been found in the wider literature (Lyssenko et al., 2018;Reuben & Parish, 2022;Schalinski et al., 2015;Scott & Baron-Cohen, 1996). ...
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An increasing number of studies are investigating the links between autism and borderline personality disorder. Studies report overlapping differences and the challenges in differentiating between these two diagnostic labels. In practice, there are many people, especially autistic women, who feel that they were misdiagnosed with borderline personality disorder. This study aimed to explore the experiences of autistic adults who were previously diagnosed with borderline personality disorder. This is an interpretive phenomenological study. Data were collected using one-to-one, semi-structured interviews. Interview audio-recordings were transcribed and analysed using an interpretive phenomenological analysis. Ten people participated. All recalled autistic differences since childhood that went unnoticed. In most cases, borderline personality disorder was felt to have been a misdiagnosis. This misdiagnosis carried stigma, introduced diagnostic overshadowing and led to harmful experiences for our participants. While they did not identify with the diagnosis, they felt powerless to challenge it. In contrast, receiving an autism diagnosis was ‘life changing’. While this did not solve everything for them, it was deeply validating. It also allowed them to be their true authentic selves, shifting the focus away from ‘treatment’ and changing who they are to suit others, towards acceptance of their differences and neurotype. This significantly improved their mental health. Lay Abstract Autistic people face many barriers to receiving an autism diagnosis. Often, they may be misdiagnosed with borderline personality disorder instead. For our study, we interviewed 10 autistic adults who had previously been diagnosed with borderline personality disorder. This helped us to better understand their experiences. They explained how borderline personality disorder is quite stigmatised and may suggest that people are to blame for their differences in behaviour. They found the treatments they had to try for borderline personality disorder to be harmful. For example, these treatments promoted ‘masking’. Previous research showed that masking can be harmful for autistic people, linking it to risk of suicide. This diagnosis also led to healthcare professionals neglecting them and discounting their beliefs. Once they were diagnosed with borderline personality disorder, it was hard to access an autism assessment. When they did receive their autism diagnoses, this was much more positive. This diagnosis was validating. It also improved their mental health, as they were no longer expected to mask – their differences were now accepted. They still felt that autism was stigmatised in society. However, this was very different to the stigma around borderline personality disorder. They felt autism stigma was more about their competence as people, whereas borderline personality disorder stigma was about how they were broken and might be harmful to others. This study is important because it allows their stories to be heard by researchers and healthcare professionals alike. Adding their voices helps to humanise them, promoting positive change in mental health services. More research is now needed.
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Wilderness and adventure therapy (WT, AT) have employed cognitive or adaptive dissonance and involuntary treatment for decades. Cognitive dissonance occurs when people are faced with situations that do not confirm their expectations. Past WT participants have protested that involuntary, inescapable and harsh conditions harmed them through PTSD and dissociation. We compare dissonance and dissociation using a critical realist and argumentative research process using publicly available data. We argue that dissociation is a response, recorded both in the design of WT and in participant statement, that is mistaken for dissonance. Deliberate use of forced cognitive dissonance during involuntary treatments are also the conditions that may cause dissociation. Therefore, planning to enforce cognitive dissonance during coercive WT or AT is likely to be harmful and, knowing of this potential, may be regarded as malpractice.
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Objective: Although many autistic adults show high posttraumatic stress, PTSD is underdiagnosed in this population. This study aims to examine correlates of autistic adults screening positive for PTSD (PTSD+) and predictors of a professional PTSD diagnosis (Diagnosis+) in the PTSD+ subgroup. Method: Self-identified autistic adults (N = 677) completed an online survey on their demographic characteristics, mental health symptoms, and trauma history. T tests and chi-squares were used to compare subgroups, and logistic regression was used to predict diagnosis status. Results: PTSD+ participants were less likely to be employed or to identify as cisgender men, had more mental health symptoms and worse functional impairment, and had experienced a higher number of traumas and more interpersonal trauma. The same was true for Diagnosis+ participants, who were also older and more likely to have a marginalized racial/ethnic identity. Among participants who were PTSD+, older age, being a woman or gender minority, being unemployed or on disability, having increased posttraumatic stress, having more co-occurring conditions, and having lower functional impairment predicted being Diagnosis+. The final model explained 35% of variance in diagnosis. Conclusion: PTSD is associated with significant impairment in autistic adults, but it often goes unrecognized. In particular, autistic cisgender men might be underdiagnosed with PTSD because of gendered stereotypes. High functional impairment may also increase barriers to obtaining an appropriate diagnosis. Future research should include participant treatment history as a potential factor. Clinicians should be aware of these potential signs of PTSD and diagnostic barriers when working with autistic clients.
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Objective The purpose of the study is to analyses the relationship between interoceptive sensibility and somatoform disorders among persons with Autism Spectrum Disorder (ASD). It has been assumed that the interoceptive sensibility is accompanied by a high level of alexithymia and emotion dysregulation in somatoform disorders. Methods Persons under the care of the foundation helping people with ASD were asked to participate in the study. In total, 205 people took part in the research. The participants aged from 18 to 63 (M = 34.91; SD = 8.44). The ASD group comprised 79 persons (38.5% of subjects). The control group comprised 126 individuals (61.5% of subjects). Participants completed self-report questionnaires measuring autism (AQ), interoceptive sensibility (BPQ), alexithymia (TAS20), emotional dysregulation (DERS), and somatoform disorder (SDQ). Results The analyses showed a moderation effect of the group, which indicates the existence of a relationship between interoceptive sensibility and somatoform disorders to the greater extent in the clinical group than in the control group. In addition, the serial multiple mediation model analysis allowed to verify the mediating effect of emotion dysregulation and alexithymia on the abovementioned relationship. The indirect effect, which assumed the mediating role of alexithymia turned out to be significant, contrary to the indirect effect where emotion dysregulation was a mediator in a situation where both variables were applied simultaneously. Conclusions Interoceptive sensibility correlated with level of alexithymia, in particular, difficulties in identifying and verbalizing emotions and emotion dysregulation in the lack of emotional awareness and lack of emotional clarity and is associated with somatoform disorders in the investigated group regardless of participants’ belonging to the ASD or control group.
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Background: Camouflaging (also referred to as ‘masking’) is a commonly reported strategy used by autistic adults in everyday life to help them cope in social situations. Autistic adults report that camouflaging can have a devastating effect on mental health and wellbeing, yet little is known about the lived experiences of camouflaging and its impact. Method: We designed an online survey in partnership with autistic adults, to explore experiences of camouflaging and its impact on mental health. Participants self-reported lifetime experience of camouflaging, where they camouflaged, frequency and length of time spent camouflaging. Four open questions allowed participants to elaborate their answers to the closed questions on frequency and length of time, and subsequently any positive and negative aspects of their experience of camouflaging. 277 autistic adults who self-reported a diagnosis of an Autism Spectrum Condition (ASC) (128 female, 78 male) or self-identified as autistic (56 female, 15 male), were included in the analysis of qualitative responses to the open-ended questions. Findings: We thematically analysed participant answers from the open questions. Three main themes emerged. First, “dangers of camouflaging” described how the amount of time spent camouflaging led to exhaustion, isolation, poor mental and physical health, loss of identity and acceptance of self, others’ unreal perceptions and expectations, and delayed diagnosis. Second, “positive aspects of camouflaging” included greater access to social spaces, and protection from harm. Camouflaging was therefore seen as necessary to survive in a world designed for the neurotypical majority. Third, autistic adults described being diagnosed and accepted for who they are as reasons for “why I don’t need to camouflage like I used to”. Conclusions: Time spent camouflaging is what seems to be most damaging for the participants’ mental health. The main reason reported for needing to spend so much time camouflaging is society’s lack of awareness and acceptance of autism.
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We reviewed articles that appeared between 2000 and 2018 and that addressed fantasy proneness as measured by the Creative Experiences Questionnaire (CEQ) or the Inventory of Childhood Memories and Imaginings (ICMI). We searched Google Scholar to identify relevant articles and used the Hunter-Schmidt method to meta-analyze the correlates of fantasy proneness. We identified 132 articles describing 139 samples that together included 24,007 research participants. Effect sizes were large (r’s > .50) for hallucinatory experiences, magical ideation, perceptual aberration, dissociation, and excessive daydreaming. Contrary to the popular idea that childhood trauma is a prominent precursor of fantasy proneness, we found that the effect sizes for self-reported trauma, were small, as was also the case for depression, anxiety, and memory illusions (r’s < .30). Strides in this research area can be made when future studies move beyond the fantasy proneness-trauma link to test causal models regarding the antecedents of maladaptive fantasizing
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This study examines the public stigma of children with autism spectrum disorder (ASD) by their school-aged peers, focusing on both explicit and implicit attitudes. The twofold aims were to provide a broader picture of public stigma and to explore age-related changes in attitudes. Students completed an explicit measure of the public stigma and an implicit measure of attitudes after watching a video displaying children with ASD vs. typically developing (TD) children. Both measures showed more negative perceptions towards children with ASD compared to TD children. However, while explicit attitudes improved with age, implicit attitudes remained constantly negative. This finding suggests that both explicit and implicit attitudes should be considered when promoting an inclusive climate at school.
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Background: Autistic masking is an emerging research area, and so far, research has suggested that masking has a negative effect on autistic people. Masking relates to general social practices (such as identity management) and is often driven by stigma avoidance. Many nonautistic people also experience stigma that might drive them to suppress aspects of their identity. In this study, we investigate similarities and differences in experiences of masking in autistic and nonautistic people. Methods: We conducted an online survey about experiences and views of masking in autistic people (n = 144), neurodivergent people without an autism diagnosis (n = 49), and neurotypical people (n = 45) recruited via social media. We used thematic analysis to analyze responses to open-ended items about masking, using an inductive approach, at a semantic level, with a critical realist paradigm. Results: Thematic analysis revealed that some aspects of masking are shared across autistic and nonautistic people, such as utilizing mimicry of others as a social strategy or feeling exhausted from masking. All groups reported that masking made them feel disconnected from their true sense of identity and had a negative effect on them. Other aspects of masking seemed more specific to autistic people, such as sensory suppression, and masking leading to suicidal ideation. Conclusions: Our findings suggest that many aspects of masking are experienced across different neurotypes and are likely related to outside perceptions of difference and stigma. It is likely that what we call "autistic masking" is similar to other forms of stigma management previously theorized. Some aspects of masking do seem more specific to the autistic neurotype (e.g., suppression of stimming) and should be explored further to provide support for autistic people recovering from the negative impact of masking. Lay summary: Why was this study done?: Masking is the process of intentionally, or unintentionally, hiding aspects of yourself to avoid harm. Recent research has suggested that autistic people might mask a lot and that this can lead to long-term problems in mental health. At the moment, we do not know which parts of masking are specific to autistic people, and which parts might be experienced by others, especially other neurodivergent people who are not autistic, for example, people with attention-deficit hyperactivity disorder (ADHD).What was the purpose of this study?: The purpose of this study was to find out about masking in autistic and nonautistic people, to find out whether some parts of masking are specific to autistic people, or experienced by others.What did the researchers do?: We conducted an online survey about masking with three groups of people: autistic people, nonautistic people who have another neurodevelopmental or mental health diagnosis, such as dyslexia, ADHD, or depression, and nonautistic people who do not have any neurodevelopmental or mental health diagnoses. The survey included an open text box for people to write about their experiences of masking and their opinions about masking. We analyzed these responses using a method called "thematic analysis." This method helps us look for ideas that people commonly talk about in their answers.What were the results of this study?: We found out that autistic and nonautistic people think masking is very complicated and has a negative effect on them. Both autistic and nonautistic people said that masking made them exhausted and really unhappy and that it made them feel like people did not know the "real them." Only autistic people mentioned that masking sometimes makes them feel suicidal and that masking includes things that other groups did not mention (such as trying to hide being upset by sensory things such as loud noise).What do these findings add to what was already known?: Our findings suggest that some aspects of masking do not just affect autistic people (such as feeling like people do not know the real you), but other parts might be more unique to autistic people (such as hiding stims from other people).What are potential weaknesses in this study?: More women than men and nonbinary people took part, which means that we know more about women than other people. We also do not really know whether everyone in the nonautistic groups were really "not autistic." They could be autistic people who do not have a diagnosis, which might affect our results.How will these findings help autistic people now or in the future?: We hope our findings will help people to understand how masking affects autistic and nonautistic people. We also hope that people designing new studies will look at important things such as whether someone is autistic and nonbinary, or autistic and ADHD as these things might affect their experiences.
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Background: Many autistic adults report interpersonal traumas (IPTs) such as physical or sexual assault, which are often associated with posttraumatic stress and dissociation. Factors such as gender might make autistic individuals particularly vulnerable to experiencing IPT and negative posttraumatic symptoms. Methods: In this study, 687 self-identified autistic adults completed an online survey on their traumatic experiences and mental health symptoms. Results: Seventy-two percent of participants reported experiencing sexual assault, other unwanted or uncomfortable sexual experiences, or physical assault. Forty-four percent of participants met the criteria for posttraumatic stress disorder (PTSD), including 50% of those who had experienced IPT and 28% of those who had not (odds ratio = 2.50; 95% confidence interval 1.74–3.60). IPT was also significantly associated with higher levels of psychoform (p < 0.001) and somatoform (p < 0.001) dissociation. Autistic cisgender women and gender minorities experienced a significantly higher number of traumas (p = 0.004) and were significantly more likely than cisgender men to experience sexual IPT (p < 0.001) and meet the criteria for PTSD (p < 0.001). There were no significant differences between autistic individuals with and without a professional autism spectrum disorder (ASD) diagnosis. Conclusions: IPT is associated with potentially severe mental health outcomes for autistic adults. Autistic women and gender minorities may be particularly vulnerable to sexual IPT and adverse outcomes. Increased screening for a history of IPT and posttraumatic symptoms is recommended for all autistic adults regardless of ASD diagnosis status.
Book
Autism is a deeply contested condition. To some, it is a devastating invader, robbing families of their children and sufferers of their personhood. To others, it is a form of neurodiversity, a fundamental and often valued aspect of identity that is more similar to race or gender than to disease states. How do young people coming of age with an autism spectrum diagnosis make sense of this conflict in the context of their own developing identity? The book addresses this question through sustained ethnographic engagement, informed by both clinical psychology and anthropology, within communities where people on the autism spectrum come together to live, learn, work, love, and play. Using an approach known as clinical ethnography, the book tracks neuroscientific discourses as they are adopted, circulated, and transformed among those affected by Asperger’s syndrome and related autism spectrum conditions. Dominant ways of talking about autism, whether as invasive disease or as hardwired neurogenetic identity, share a fundamental presupposition: that the healthy self is sharply bounded and destroyed if it is altered. However, the subjective experiences of youth on the spectrum exceed the limitations of these medical models. Reaching beyond medicine for their narratives of difference and disorder, these youth draw instead on shared mythologies from popular culture and speculative fiction to conceptualize their experiences of discontinuous and permeable personhood. In doing so, they also pioneer more inclusive understandings of what makes us who we are.
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The current paper set out to investigate the long-term impacts autistic adults experienced from childhood participation in Applied Behaviour Analysis (ABA). Possible participants were recruited through advertisement on social media and through autism and ABA organisations. Possible participants were given the choice between an online or face-to-face interview or an anonymised online questionnaire. Reflections from 10 participants were indicative of a predominantly detrimental impact of ABA. Reflections gave rise to a core theme ‘Recalling Hidden Harms of Childhood Experiences of ABA’. Outcomes are discussed in relation to impact on Autistic Identity, current research and progressing understanding of the impacts of Early Intervention from the autistic perspective. The practical implications of ABA are discussed alongside recommendations for future practice and research with the involvement of autistic individuals within interventive processes. This is the first paper to take an in-depth, qualitative approach to autistic experiences of ABA. The findings themselves are driven to conceptualise and give voice to the core impacts which carried through participants exploration and understanding of self.
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This paper has both theoretical and practical ambitions. The theoretical ambitions are to explore what would constitute both effective and ethical treatment of Autism Spectrum Disorder (ASD). However, the practical ambition is perhaps more important: we argue that a dominant form of Applied Behavior Analysis (ABA), which is widely taken to be far-and-away the best "treatment" for ASD, manifests systematic violations of the fundamental tenets of bioethics. Moreover, the supposed benefits of the treatment not only fail to mitigate these violations, but often exacerbate them. Warnings of the perils of ABA are not original to us-autism advocates have been ringing this bell for some years. However, their pleas have been largely unheeded, and ABA continues to be offered to and quite frequently pushed upon parents as the appropriate treatment for autistic children. Our contribution is to argue that, from a bioethical perspective, autism advocates are fully justified in their concerns-the rights of autistic children and their parents are being regularly infringed upon. Specifically, we will argue that employing ABA violates the principles of justice and nonmaleficence and, most critically, infringes on the autonomy of children and (when pushed aggressively) of parents as well.