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Content uploaded by Katherine E. Reuben
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All content in this area was uploaded by Katherine E. Reuben on Apr 08, 2022
Content may be subject to copyright.
151
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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154
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 12–18 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 22–25)
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 22–25)
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 41–45)
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 31–35)
“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 31–35)
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 22–25)
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 26–30)
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 36–40)
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 31–35)
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 22–25)
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 31–35)
KATHERINE E. REUBEN, MPH, AND AYDEN PARISH
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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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