RESEARCH ARTICLE

Experience of Trauma and PTSD Symptoms in Autistic Adults: Risk

of PTSD Development Following DSM-5 and Non-DSM-5 Traumatic
Life Events
Freya Rumball , Francesca Happé, and Nick Grey

Research to date suggests that individuals with autistic spectrum disorder (ASD) may be at increased risk of developing
post-traumatic stress disorder (PTSD) following exposure to traumatic life events. It has been posited that characteristics
of ASD may affect perceptions of trauma, with a wider range of life events acting as possible catalysts for PTSD develop-
ment. This study set out to explore the nature of “trauma” for adults with ASD and the rates of self-reported PTSD symp-
tomatology following DSM-5 and non-DSM-5 traumas—the latter being defined as those that would not meet the
standard DSM-5 PTSD trauma Criterion A. Fifty-nine adults with ASD who reported exposure to traumatic events took
part in the study, which involved completing a series of online questionnaires. Thirty-three individuals reported
experiencing a “DSM-5” traumatic event (i.e., an event meeting DSM-5 PTSD Criterion A) and 35 reported a “non-DSM-
5” traumautic event. Trauma-exposed ASD adults were found to be at increased risk of PTSD development, compared to
previous general population statistics, with PTSD symptom scores crossing thresholds suggestive of probable PTSD diag-
nosis for more than 40% of ASD individuals following DSM-5 or non-DSM-5 traumas. A broader range of life events
appear to be experienced as traumatic and may act as a catalyst for PTSD development in adults with ASD. Assessment of
trauma and PTSD symptomatology should consider possible non-DSM-5 traumas in this population, and PTSD diagnosis
and treatment should not be withheld simply due to the atypicality of the experienced traumatic event. Autism Res
2020, 00: 1–11. © 2020 The Authors. Autism Research published by International Society for Autism Research published by
Wiley Periodicals, Inc.

Lay Summary: This study explored the experience of trauma and rates of probable post-traumatic stress disorder (PTSD)
in adults with autistic spectrum disorder (ASD). We asked 59 autistic adults to complete online questionnaires about their
experiences of stressful or traumatic events and related mental health difficulties. Autistic adults experienced a wide range
of life events as traumatic, with over 40% showing probable PTSD within the last month and over 60% reporting proba-
ble PTSD at some point in their lifetime. Many of the life events experienced as traumas would not be recognized in some
current diagnostic systems, raising concerns that autistic people may not receive the help they need for likely PTSD.

Keywords: post-traumatic stress disorder; PTSD; autism; ASD; trauma; prevalence

Introduction health difficulties are common within this population, with

Autism spectrum disorder (ASD) is a neurodevelopmental
condition characterized by impairments in reciprocal social
interaction and social communication across multiple set-
tings, and restricted and repetitive behaviors and interests
[American Psychiatric Association, 2013]. Individuals with
ASD are known to be at increased risk of experiencing
adverse life events, such as peer victimization [Humphrey &
Hebron, 2015; Sreckovic, Brunsting, & Able, 2014] and mal-
treatment [McDonnell et al., 2019]. Co-occurring mental
research showing, for example, heightened rates of depres-
sion compared to a typically developing (TD) community
sample [Kim, Szatmari, Bryson, Streiner, & Wilson, 2000]
and elevated rates of anxiety compared to a group of indi-
viduals with intellectual disability (ID) [Bakken et al.,
2010]. It has been posited that core features of ASD may
also confer heightened risk of post-traumatic stress disorder
[PTSD; Haruvi-Lamdan, Horesh, & Golan, 2018; Hoover,
2015; Kerns, Newschaffer, & Berkowitz, 2015], although
this has been little explored to date [Rumball, 2019].

From the King’s College London, London, UK (F.R., F.H.); South London and Maudsley NHS Foundation Trust, London, UK (F.R.); Sussex Partnership
NHS Foundation Trust, Worthing, UK (N.G.); University of Sussex, Brighton, UK (N.G.)
Francesca Happé and Nick Grey are joint senior authors.
Received November 15, 2019; accepted for publication March 30, 2020
Address for correspondence and reprints: Freya Rumball, Social, Genetic and Developmental Psychiatry Centre, Institute of Psychiatry, Psychology and
Neuroscience - PO80, De Crespigny Park, Denmark Hill, London SE5 8AF, United Kingdom. E-mail: freya.1.rumball@kcl.ac.uk
This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribu-
tion in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
Published online 00 Month 2020 in Wiley Online Library (wileyonlinelibrary.com)
DOI: 10.1002/aur.2306
© 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals, Inc.

INSAR Autism Research 000: 1–11, 2020 1

 PTSD is a disorder that can develop following exposure
to a traumatic life event. Within the English general popu-
lation, the conditional probability of developing PTSD fol-
lowing exposure to a trauma is estimated to be 8.9%
[McManus, Meltzer, Brugha, Bebbington, & Jenkins, 2009].
Symptoms of PTSD include (a) re-experiencing the trauma
through flashbacks, intrusive memories and nightmares,
(b) suppression of these re-experiencing symptoms and
avoidance of trauma reminders, (c) hyperarousal, (d) negative
alterations in mood and cognition, and (e) an impact on
social and/or occupational functioning [American Psychi-
atric Association, 2013]. Although the current edition of
the Diagnostic and Statistical Manual of Mental Disorders
(5th ed.; DSM-5; American Psychiatric Association, 2013)
classifies PTSD within the category of “trauma-related dis-
orders,” PTSD symptomatology presents with many anxi-
ety related features, and was previously classified within
the “anxiety disorders” category in earlier editions of DSM
(4th ed., text rev; DSM-IV-TR; American Psychiatric Associ-
ation, 2000). Considering the heightened incidence of
adverse life events and anxiety disorders in ASD, it is sur-
prising that there has been very little research into the risk
of trauma exposure or PTSD development within this pop-
ulation. A review of the literature, summarizing the
24 papers in the field of PTSD in ASD to date [Rumball,
2019], suggests that PTSD occurs at a similar or increased
rate, while recent research findings illustrate elevated rates
of PTSD in individuals with ASD (45%) compared to TD
controls (4.5%; Rumball et al., 2020).
According to DSM-5 criteria [American Psychiatric
Association, 2013] PTSD is only diagnosable following
exposure to:
actual or threatened death, serious injury, or sexual vio-
lence, in one (or more) of the following ways:
1. Directly experiencing the traumatic event(s).
2. Witnessing, in person, the event(s) as it occurred to
others.
3. Learning that the traumatic event(s) occurred to a
close family member or close friend, the event(s) must
have been violent or accidental.
4. Experiencing repeated or extreme exposure to aversive
details of the traumatic event(s) (e.g., first responders
collecting human remains; police officers repeatedly
exposed to details of child abuse).
(Criterion A; American Psychiatric Association, 2013)
However, the definition of “trauma” has been widely
debated across the field [Weathers & Keane, 2007] and the
utility of Criterion A challenged [Boals & Schuettler, 2009;
Brewin, Lanius, Novac, Schnyder, & Galea, 2009]. A range
of non-Criterion A events have been reported to trigger
the development of PTSD symptoms [Rosen & Lilienfeld,
2008; Scott & Stradling, 1994]. Such as, learning of the
sudden unexpected death of a close relative or friend
2 Rumball et al./Experience of trauma and PTSD in ASD
[Breslau & Kessler, 2001], or cumulative and prolonged
stress from bullying or harassment [Nielsen, Tangen,
Idsoe, Matthiesen, & MogerØy, 2015; Pathe & Mullen,
1997]. Furthermore, it has been posited that PTSD symp-
toms may be more easily triggered by lower intensity non-
Criterion A traumas in individuals with heightened stress
reactivity [Brewin et al., 2009] or altered perceptual experi-
ences such as psychosis, other delusional states, and ASD
[Brewin, Rumball, & Happé, 2019].
Individuals with ASD see and understand the world dif-
ferently and often show intense anxiety responses to
apparently harmless situations, for example, changes in
routine or sensory stimuli [Pfeiffer, Kinnealey, Reed, &
Herzberg, 2005; Rodgers, Glod, Connolly, & McConachie,
2012]. Although non-Criterion A events such as bullying
have been associated with PTSD symptom development
both across the general population [Nielsen et al., 2015]
and in ASD [Shepler, 2016], it has been posited that a
broader or different range of life experiences may be inter-
preted as traumatic, and possibly act as a catalyst for
PTSD-like symptom presentation, for individuals with ASD
[Brewin et al., 2019; Kerns et al., 2015; Haruvi-Lamdan
et al., 2018]. Although rates of Criterion A trauma expo-
sure have been found to be around 25% in individuals
with ASD [Mehtar & Mukaddes, 2011], in somewhat loos-
ening the definition of trauma (to include specific stressful
life events, for example, parental divorce/separation or fail-
ing a school test) more than 50% of individuals with ASD
were reported (via parent report) to experience at least one
event in their lifetime which was interpreted as traumatic
[Taylor & Gotham, 2016]. To the best of the authors’
knowledge, no published research to date has systemati-
cally explored the experience of non-predefined “non-
DSM-5”1 traumas in ASD and the rates of associated PTSD
symptomatology. Although a population-based study of
the prevalence of trauma exposure and PTSD development
in ASD would be ideal, a more limited exploration of a vol-
unteer sample of trauma exposed adults with ASD has a
role at this point in expanding the currently very limited
knowledge base in this important field of enquiry, and lay-
ing the groundwork for such large-scale research projects.
This study of trauma exposed autistic adults without intel-
lectual disabilities, aims to address the following
questions:
• What events are interpreted as traumatic by adults
with ASD?
1. Which DSM-5 Criterion A events are reported by
adults with ASD (DSM-5 traumas)?
2. Which events that would not meet DSM-5 Criterion
A are interpreted as traumatic by adults with ASD
(non-DSM-5 traumas)?
1
The term non-DSM-5 trauma will be used to refer to any event that is
interpreted as traumatic by the individual, but which would not meet the
requirements for DSM-5 PTSD “Criterion A.”
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• What are the rates of probable current and lifetime
PTSD in trauma-exposed adults with ASD?
1. Do the rates of probable PTSD vary by trauma type
(DSM-5 or non-DSM-5 trauma)?
• Is the experience of trauma type (DSM-5 or non-DSM-
5 trauma) or PTSD influenced by gender or autistic
traits?
Methods
Participants
Sixty-three adults with a diagnosis of ASD completed an
online survey. Four individuals were excluded post-com-
pletion as they did not report having experienced any
DSM-5 or non-DSM-5 traumatic life events, resulting in a
final sample of 59 adults with ASD (36 female, aged 19–
67 years, mean age 39 years, SD 0.49 years) who reported
having experienced an event they found to be traumatic,
as defined below. The ethnicity of participants was pre-
dominantly white (N = 53, 89.8%), with other ethnicities
including Asian (N = 2, 3.4%), African/Caribbean/Black
British (N = 1, 1.7%) mixed ethnicity or other (N = 3,
5.1%). The samples were generally well educated,
although four participants reported having no qualifica-
tions (6.8%). Forty reported having GCSE qualifications
(67.8%), 38 also had A-levels (64.4%), 23 had a degree
(39%), 10 had a Master’s degree (16.9%), 1 had a PGCE
(1.7%), and 1 had a PhD (1.7%). Roughly half the sample
were in employment (N = 28, 47.5%), 10 were students
(16.9%), and 22 were unemployed or on disability bene-
fits (35.6%). Further data on socioeconomic status was
not recorded.
Not all questionnaire items were completed by all par-
ticipants, as some required certain conditions to be met
(e.g., reporting a “DSM-5” trauma based on the Life
Events Checklist or reporting a “non-DSM-5 trauma”)
and a small number of participants ended the survey pre-
maturely. The specific N for each analysis is reported
within the results.
Inclusion criteria were a diagnosis of any autism spec-
trum disorder (including autism, Asperger syndrome, non-
DSM-5-autism, and pervasive developmental disorder)
according to ICD or DSM criteria, aged 18 years or older,
experience of one or more events within their lifetime
which they experienced as having been traumatic (this was
not limited to DSM-5 Criterion A traumatic events) and flu-
ency in English. The exclusion criteria were diagnosis of
an ID, significant current use of alcohol or substances
(abuse or dependence), and requiring an interpreter. In
addition to self-report of having had a clinical diagnosis of
ASD from a health professional, definitive confirmation of
ASD diagnosis was obtained for 48/59 participants, via
examination of their health records, receiving copies of
INSAR Rumball et al./Experience of trauma and PTSD in ASD
their diagnostic reports, or GP confirmation. The study
was approved by the London - City & East Research Ethics
Committee (REF 17/LO/0337).
Measures
Trauma exposure. Life events checklist (LEC-5; Weathers,
Blake, et al., 2013). This is a 17-item self-report measure of
traumatic life events. The respondent indicates whether
the trauma happened to them, they witnessed it, learnt
about (happening to someone close to them), it hap-
pened as part of their job, or it does not apply (never
experienced). The items cover typical DSM Criterion A
traumatic events, and this questionnaire is extensively
used in PTSD research studies with neurotypical partici-
pants. It should be noted that item 17, the qualitative
response option within the LEC-5 which allows for
“other” traumatic events to be self-reported, was removed
as this was included under the “non-DSM-5 trauma”
section.
Non-DSM-5 traumas. Participants were asked whether
“any other event has happened to you in your life which
has felt like an extremely unpleasant, stressful or trau-
matic experience?”, “any other event happened to you in
your life which as caused you to have nightmares about
it or think about it when you did not want to?,” “any
other event happened to you in your life which you have
subsequently tried hard not to think about or go out of
your way to avoid situations that remind you of it?”. If
responses were affirmative to any of these three ques-
tions, then the individual was asked to give details of the
nature of the event, and if more than one event was listed
within this section, then to indicate which one had the
biggest and longest impact upon their life.
PTSD symptomatology. PTSD checklist (PCL-5;
Weathers, Litz, et al., 2013). This 20-item self-report ques-
tionnaire assesses the severity of current PTSD symptoms
according to DSM-5 criteria, with regard to the last
month. Although not a definitive diagnostic measure,
preliminary research suggests a cutoff score of 33 is a use-
ful threshold to indicate PTSD symptomatology which
may be at clinical levels [Bovin et al., 2016]. It is impor-
tant to stress that the PCL-5, as with all self-report ques-
tionnaires assessing mental health symptoms, only yields
a score associated with a possible diagnosis of PTSD.
This questionnaire was asked in relation to both DSM-5
(based on the LEC-5) and non-DSM-5 (based on the non-
DSM-5 trauma questions) traumas. Where more than one
event was described in either category, participants were
asked “which one of these events would you say was the
worst overall and bothers you the most currently or has
caused you the most problems?” and the PCL-5 was com-
pleted in relation to this event. As such, participants who
3
reported both a DSM-5 and non-DSM-5 trauma com-
pleted the PCL-5 twice, once in relation to the most dis-
tressing trauma in each category.
PTSD checklist (PCL-5) – lifetime. The above PCL-5 question-
naire was adapted by the current research team in order to
create a measure of lifetime PTSD symptomatology (PCL-5-
lifetime). Participants were asked if there had been any time
period since the trauma (DSM-5 or non-DSM-5) where they
were a lot more troubled by the symptoms that they had just
been asked about, than they were in the past month. If yes,
and the symptoms lasted for more than 1 month, they were
asked to complete another PCL-5 in relation to that period of
time. As such, participants who reported both a DSM-5 and
non-DSM-5 trauma and described having had a period of
time in the past when they were a lot more troubled by the
symptoms that they were just asked about were asked to
complete the PCL-5-lifetime twice, that is, once each for the
same DSM-5 and non-DSM-5 trauma for which they com-
pleted the PCL-5 previously.
Autistic traits. Autism quotient. This 50-item self-report
questionnaire assesses the presence of autistic traits; a
higher score indicates presence of more autistic traits
[Baron-Cohen, Wheelwright, Skinner, Martin, & Clubley,
2001]. Although not a definitive diagnostic measure, 80%
of those with an existing ASD diagnosis have been
reported to score ≥32 on the autism quotient (AQ), com-
pared to 2% of controls, suggesting a useful cutoff for
research purposes [Baron-Cohen, et al., 2001].
Procedure
The study protocol was reviewed by the NIHR Feasibility
and Acceptability Support Team for Researchers (FAST-R)
who are made up of people with the experience of mental
health problems and their careers, who have been spe-
cially trained to advise on research documentation.
Where possible, the study design was amended in accor-
dance with their suggestions. Individuals were recruited
by researchers and clinicians via relevant NHS adult
autism and adult mental health services within the South
London and Maudsley NHS foundation trust, university
participant databases of adults with ASD, and self-referral
via wider advertising. Recruitment materials stated that
the study was recruiting individuals “who have experi-
enced either a stressful, negative, painful, traumatic,
or upsetting event in their lifetime.” Potential partici-
pants were screened for eligibility. Participants provided
written informed consent and completed the study
either online (N = 55), by post (N = 3), or in-person
(N = 1). The questionnaires were administered in the
same order for all participants. Participants were
debriefed and reimbursed £10 for their time.
4 Rumball et al./Experience of trauma and PTSD in ASD
Data Analysis
The qualitative descriptions of each reported life event
were examined to determine whether or not the event
met Criterion A for PTSD according to DSM-5 criteria. A
set of criteria for coding was agreed in advance based on
DSM-5 definitions. Data were coded independently by
two raters who had both clinical and academic expertise
in PTSD, and disagreements in ratings were discussed
until a consensus was reached. Inter-rater reliability (pre
consensus discussions) was very good, with a Kappa of
0.88 [Altman, 1991]. Data were assigned as either a life
event meeting DSM-5 Criterion A (“DSM-5 trauma”) or a
life event not meeting DSM-5 Criterion A (“non-DSM-5
trauma”), according to the consensus codes. Statistical
analysis was conducted using SPSS Software version 24.
Results
DSM-5 Traumatic Life Events
Traumatic life events as reported within the LEC are dis-
played in Table 1, with the frequency of multiple LEC
traumas displayed in Table 2. Of the 53 individuals
(32 female) who went on to complete the PCL-5, 33 par-
ticipants (23 female; 72% of all females and 48% of all
males) reported a traumatic life event which was coded as
meeting DSM-5 Criterion A. Of traumas that met DSM-5
Criterion A, according to the participants’ qualitative
description of their “worst” event, the most commonly
reported traumas were sexual and physical abuse (Fig. 1).
Non-DSM-5 traumatic life events. Thirty-five partici-
pants (17 female; 47% of all females and 78% of males)
reported having experienced a life event that they found to
be traumatic, but which did not meet DSM-5 PTSD Crite-
rion A (non-DSM-5 trauma), 17 of whom reported two such
events. The most commonly reported non-DSM-5 trau-
matic events included bullying, “non-traumatic bereave-
ment” (according the DSM criteria) and traumas relating to
mental health problems such as anorexia and “break-
downs” (Fig. 2). In addition, abandonment by a significant
other (mother or wife) and stress associated with social diffi-
culties were also reported by multiple individuals.
Overlap in traumatic life events. Fifteen participants
(8 female, 22% of all females and 30% of all males)
reported exposure to both a DSM-5 and a non-DSM-5
trauma, while 18 reported DSM-5 trauma only (15 female,
42% of all females and 13% of all males) and 20 reported
non-DSM-5 trauma only (9 female, 28% of all females
and 52% of all males).
INSAR
Table 1. Number of Individuals Endorsing Each Item on the Life Events Checklist (LEC; Typical Traumatic Life Events) Across
the Whole Sample (N = 59). Total Number of Typical Traumatic Events Reported Across the Sample = 247
LEC event Happened to me Witnessed Learnt about it Part of my job Total

Natural disaster 7 0 3 0 10
Fire or explosion 3 3 6 0 12
Transportation accident 15 4 6 0 25
Serious accident at work, home, or during recreational activity 8 3 1 0 12
Exposure to toxic substance (e.g., dangerous chemicals, radiation) 1 0 3 0 4
Physical assault 39 1 0 0 40
Assault with a weapon 9 1 5 0 15
Sexual assault (rape, attempted rape, made to perform any type of sexual 21 1 5 0 27
act through force, or threat of harm)
Other unwanted or uncomfortable sexual experience 23 0 1 0 24
Combat or exposure to a war-zone (in the military or as a civilian) 1 0 0 0 1
Captivity (e.g., being kidnapped, abducted, held hostage, prisoner of war) 4 0 0 0 4
Life-threatening illness or injury 17 10 1 0 28
Severe human suffering 4 4 4 1 13
Sudden violent death (e.g., homicide, suicide) 2 0 9 2 13
Sudden accidental death 0 2 10 1 13
Serious injury, harm, or death you caused to someone else 4 0 2 0 6

Table 2. Exposure to Multiple Trauma Types, as Reported on Abduction (1) Serious injury (1)
Sudden death of close 3% 3%
the Life Events Checklist (LEC) Across the Whole Sample friend/family member (2)
(N = 59) 6% Physical abuse (8)
24%
Number of different typical traumatic events Suicide attempt by
close friend/family
reported N % member (2)
6%
None 5 8.5
Serious injury to
1 type of trauma 5 8.5 another individual
2 types of trauma 6 10.2 (3)
9%
3 types of trauma 8 13.6
4 types of trauma 12 20.3 Learning/witnessin
5 types of trauma 6 10.2 g sexual abuse of
another individual
6 types of trauma 7 11.9 (1)
7 types of trauma 4 6.8 3%

8 types of trauma 3 5.1 Threats to ones life

from another
9 types of trauma 1 1.7 individual (3)
10 types of trauma 1 1.7 9%
Own suicide Sexual abuse (11)
15 types of trauma 1 1.7 attempt (1) 34%
3%

Figure 1. Traumatic events meeting DSM-5 Criterion A,

Probable PTSD Rates: DSM-5 Trauma
The rate of probable current PTSD (symptomatology
crossing the suggested cut-off on the PCL-5) following
exposure to a DSM-5 trauma was 45% (15/33; 11 females;
48% of trauma-exposed females and 40% of trauma-
exposed males). The rate of lifetime probable PTSD
(symptomatology crossing cut-off threshold suggestive of
PTSD currently and/or historically) following a DSM-5
trauma was 61% (20/33; 16 females; 70% of DSM-5-
trauma-exposed females and 40% of males).
described as worst event (N = 33). The number of individuals
endorsing each typical traumatic event type is given in
parenthesis.
not differ from that following DSM-5 traumas in the pre-
sent sample. The lifetime (current and/or historical) rate
of probable PTSD following non-DSM-5 trauma was 63%
(22/35 12 females; 71% of non-DSM-5-trauma-exposed
females and 56% of males).

Probable PTSD Rates: non-DSM-5 Trauma Probable PTSD Rates: Any Trauma

The rate of probable current PTSD following non-DSM-5 Across the total sample, the rate of probable current PTSD
trauma was 43% (15/35; 7 females; 41% of non-DSM-5- following a DSM-5 and/or non-DSM-5 trauma was 47%
trauma-exposed females and 44% of males). This rate did (25/53; 17 females; 53% of trauma-exposed females and

INSAR Rumball et al./Experience of trauma and PTSD in ASD 5

 police visit to house
(1)
traumas than females (M = 0.50). Gender was not found to
bereavement (5) be associated with PTSD symptom severity (t(31) = −0.21,
bullying (6) P = 0.83) or cutoff (P = 0.49, Fisher’s exact test), following
DSM-5 trauma. Similarly, gender showed no association
with PTSD symptom severity (t(33) = −0.67, P = 0.51) or
cutoff (χ2(1,35) = 0.038, P = 0.85) following non-DSM-5
own mental health
(5) trauma.
abandonment
mother/wife (3)
Autistic traits, as measured by the Autism Quotient ques-
tionnaire, were not found to be significantly associated
with PTSD symptom severity (τb(33) = 0.18, P = 0.074) or
death of pet (1)
cut-off (U = 91, P = 0.11) following DSM-5 traumas, nor
psychological
therapy (1)
social difficulties (3) PTSD symptom severity (τb(34) = 0.078, P = 0.26) or cutoff
injury family
member (1)
(U = 137.5, P = 0.93) following non-DSM-5 trauma. There
parents divorce (1) vomiting (1) was a significant difference between males and females in
own illness (2)
ASD diagnostic process (2) the severity of autistic traits; females rated themselves as
own violence to other (1) boarding school (1)
mental health family (1) showing more ASD traits on the AQ (M = 40.86) than did
Figure 2. Atypical traumatic life events not meeting DSM-5 Cri- males (M = 34.36).
terion A (N = 35). The number of individuals endorsing each atyp-
ical traumatic event type is given in parenthesis.
Discussion
Trauma + PCL>33 for both
typical and atypical event (5) Adults with ASD reported a broad range of life events as
9%
traumatic, with both DSM-5 (DSM-5 Criterion A events)
and non-DSM-5 (non-Criterion A events) traumas being
identified as catalysts for self-reported PTSD symptom-
Trauma + PCL>33 for
atypical event (10) atology and probable PTSD (symptoms scores crossing
19%
cutoff on the PCL-5). The most commonly reported
DSM-5 traumas were sexual and physical abuse, whereas
Trauma + No PTSD
(28) bullying, bereavement, and traumas relating to mental
53%
health problems such as “breakdowns” were the most
common non-DSM-5 traumas. Previous research illus-
Trauma + PCL>33 for trates that non-Criterion A events can also act as catalysts
typical event (10)
19%
for PTSD development in the general population. Com-
paring non-DSM-5 traumas reported in previous general
Figure 3. Frequency of cases crossing PCL-5 cutoff (≥33) sug- population studies to those found in our group of ASD
gestive of current PTSD. N is given in parenthesis. adults, possible novel non-DSM-5 traumas in ASD may
include the ASD diagnostic process, experience of ther-
apy, being disturbed by one’s own violence toward
38% of males); a full breakdown of the percentages of
others, and an unannounced visit from the police. How-
individuals scoring over threshold on the PCL-5 after dif-
ever, further research is needed to rule out whether simi-
ferent trauma types is shown in Figure 3. The lifetime
lar life events are associated with PTSD symptomatology
(current and/or historical) rate of probable PTSD follow-
in the general population also.
ing any trauma was 64% (34/53 females; 75% of trauma-
The rate of probable PTSD in our ASD participants fol-
exposed females and 48% of males).
lowing DSM-5 or non-DSM-5 traumas was similar, ranging
from 43% to 45%. This is far higher than rates of probable
Influence of Gender and Autistic Traits PTSD previously reported in trauma-exposed general-pop-
ulation studies using the PCL-5 as a proxy for PTSD
The gender by trauma type interaction was not signifi- caseness, although PCL-5 cutoff values vary across the lit-
cant (Wilk’s Λ = 0.91, F(1,56) = 2.94, P = 0.06, partial erature. Rates of probable PTSD in mixed trauma-exposed
η2 = 0.09) and gender was not found to be associated with general populations range from 26.3% [Ashbaugh et al.,
exposure to DSM-5 trauma types (F(1,57) = 2.39, P = 0.13, 2016; employing a cutoff of 31] to 33% [Seligowski, Rog-
partial η2 = 0.04). However there was a significant differ- ers, & Orcutt, 2016; employing a cutoff of 38]. Literature
ence between males and females in exposure to non- administering a lifetime version of the PCL-5 is sparse,
DSM-5 trauma F(1,57) = 4.95, P = 0.03, partial η2 = 0.08), however two studies exploring lifetime probable PTSD in
with males (M = 0.78) reporting more non-DSM-5 veterans have shown rates between 8% [Mota et al., 2016]

6 Rumball et al./Experience of trauma and PTSD in ASD INSAR

and 12% [Tsai et al., 2015]; substantially lower than rates
of lifetime probable PTSD found in the current sample of
ASD adults (61% DSM-5 trauma, 63% non-DSM-5 trauma).
The rate of probable current PTSD found in this sample of
ASD adults exposed to DSM-5 traumas (45%) is directly in
line with previous research that compared the rates of
probable PTSD from the PCL across ASD (47%) and TD
(5%) adults, although participants in that study were not
selected based on prior trauma exposure [Rumball et al.,
2020]. These findings provide preliminary evidence of a
heightened risk of PTSD among adults with ASD and are
in line with the existing body of research illustrating ele-
vated rates of co-occurring mental health disorders in
adults with ASD (see review by Mannion & Leader, 2013).
Interestingly a similar proportion of individuals experi-
enced PTSD symptoms after non-DSM-5 traumas that
would not meet DSM-5 PTSD Criterion A. This finding is
in line with previous research by Shepler [2016] showing
that the experience of bullying in children with and
without ASD can result in PTSD symptomatology which
meets cutoff criteria on the Children’s Revised Impact of
Events Scale [Children of War Foundation, 2005]. These
findings suggest that PTSD symptoms can develop in
response to events that do not meet the prerequisite Cri-
terion A for PTSD according to DSM-5, and highlight the
importance of the individual’s subjective response to and
interpretation of an event when defining “trauma”
[Brewin et al., 2019]. The previous stipulation from DSM-
IV that the traumatic event must have elicited feelings of
“intense fear, helplessness of horror” was removed in
DSM-5, as this criterion was determined to have “no util-
ity” due to the differential range of peri-traumatic
responses found to be predictive of PTSD development.
As such, although the range of subjective responses to
trauma has been recognized in DSM-5, the definition of
what counts as a traumatic event has become prescrip-
tive. The ICD-11 PTSD criteria [World Health Organiza-
tion, 2018] define trauma in a more subjective manner as
“an extremely threatening or horrific event or series of
events,” allowing for individuals with ASD who experi-
ence PTSD following a non-DSM-5 trauma to be appropri-
ately diagnosed and treated. Clinicians using ICD-11
would thus be better able to diagnose PTSD in ASD com-
prehensively in relation to the range of traumas found to
act as possible catalysts, compared to those using the
more restrictive DSM-5 criteria.
Although ASD is known to be more prevalent in males
[Brugha et al., 2011], in the general population, PTSD is
known to be more prevalent amongst females [Stein,
Walker, & Forde, 2000; Tolin & Foa, 2006]. As such, it
was unclear in what way gender would be related to PTSD
in ASD. Interestingly, although no significant gender dif-
ferences were found for DSM-5 trauma exposure, males
experienced significantly more non-DSM-5 traumas com-
pared to females. Gender did not however play a role in
INSAR Rumball et al./Experience of trauma and PTSD in ASD
post-trauma susceptibility to PTSD symptom develop-
ment for adults with ASD. This suggests that although
there may be gender differences in susceptibility to non-
DSM-5 trauma exposure, males and females with ASD are
at equally elevated risk of PTSD development following a
range of traumas. Males with ASD may be more likely to
be denied a diagnosis of PTSD by clinicians using DSM-5
criteria if they are more likely to experience non-DSM-5
traumas not meeting Criterion A.
The elevated rates of probable PTSD for ASD adults
within this study may be explained by a number of cog-
nitive, behavioral, neurological, and genetic risk path-
ways. Cognitive models of PTSD development and
maintenance [Brewin, 2001; Brewin, Dalgleish, & Joseph,
1996; Ehlers & Clark, 2000] highlight the role of pre-
trauma vulnerability factors such as prior trauma expo-
sure, peri-trauma factors such as an overwhelming fear
response, visual, and detail focused processing (particu-
larly of sensory features), and post-trauma factors such as
negative/catastrophic appraisals, rumination, suppres-
sion, avoidance, and social withdrawal. Many of these
risk factors are features of ASD, for example, detail focus
[“weak-central coherence”; Frith, 1989; Happé, 1999] and
difficulties with social interaction [Bauminger & Kasari,
2002; Orsmond, Krauss, & Seltzer, 2004]; known to be
prevalent in ASD, for example, suppression [Shipherd &
Beck, 2005] and emotion dysregulation [Mazefsky, Borue,
Day, & Minshew, 2014]; or associated with polygenic
scores for ASD, for example, childhood trauma [Warrier &
Baron-Cohen, 2019]. Research in recently traumatized
individuals with acute stress disorder has shown that
when cognitive load is high, the ability to suppress memo-
ries is compromised resulting in increased traumatic intru-
sions (during active suppression and generally) and
priming toward trauma related stimuli [Nixon &
Rackebrandt, 2016]. For ASD adults with executive func-
tioning difficulties [Craig et al., 2016], high cognitive load
may be another risk mechanism for PTSD development
post-trauma. Research in the general population has also
shown that early maladaptive schemas mediate the associ-
ation between ASD traits and poor mental health out-
comes [Oshima, Nishinaka, Iwasa, Ito, & Shimizu,
2014]. For an in-depth discussion of the possible interplay
between ASD and PTSD, the reader is referred to Kerns
et al. [2015] and Haruvi-Lamdan et al. [2018].
Limitations and Future Research
As the study was widely advertised and participants were
not randomly sampled, it is not possible to determine
how representative the current samples are of the general
population of adults with ASD. Furthermore, due to the
questionnaires being designed for use in the general pop-
ulation, individuals with a confirmed diagnosis of an ID
were excluded, meaning that the findings cannot be
7
generalized to the full spectrum of autistic disorders. In
the general population, the risk of PTSD development is
negatively correlated with IQ [McNally & Shin, 1995],
such that individuals with ID are at increased risk of PTSD
development [see review Mevissen & De Jongh,
2010]. Individuals with ID are also at increased risk of
trauma exposure, such as maltreatment [Ammerman,
Hersen, Van Hasselt, Lubetsky, & Sieck, 1994]. Therefore,
it might be posited that individuals with ASD and co-
occurring ID would be at even greater risk of trauma
exposure and PTSD development than those without ID
in this current study. Future research is needed to ascer-
tain the prevalence of trauma exposure and PTSD in this
potentially at-risk population of individuals with ASD
and ID.
It is also possible that selectively recruiting trauma-
exposed individuals may have resulted in a sample with a
heightened severity of trauma experiences and possibly
heightened PTSD symptom severity overall, when com-
pared to random sampling across the population as car-
ried out in general population prevalence studies.
However, as discussed above, the rates of probable PTSD
in our sample with ASD slightly exceed even the upper
PTSD prevalence estimates from previous general popula-
tion studies recruiting trauma exposed samples. With
regard to the methodology of this study, the small sample
size, lack of random sampling, and lack of clinician con-
firmed diagnosis of PTSD prohibits conclusions regarding
“prevalence,” although the current findings suggest ele-
vated rates of PTSD symptomatology that warrant wider
scale assessment of possibly heightened vulnerability to
PTSD in ASD.
A recurring problem for clinicians and researchers
exploring mental health in individuals with ASD is the
severe lack of validated and reliable self-report and semi-
structured diagnostic measures for the assessment of
mental health difficulties in this population. Notably the
Anxiety Disorders Interview Schedule (ADIS-5) has been
adapted for use with autistic children (ADIS/ASA), how-
ever unfortunately the PTSD module did not form part of
the material adapted (Kerns, Renno, Kendall, Wood, &
Storch, 2017). In the case of PTSD symptom measure-
ment and diagnosis, no tools have been specifically devel-
oped or tested for use with ASD adults [Rumball,
2019]. As such, the psychometric properties of the battery
of self-report questionnaires employed within this study
have yet to be determined for ASD adults. A new tool for
the assessment of trauma exposure (and adverse life
events) and PTSD symptoms in children, the Interactive
Trauma Scale, has shown promising discriminant validity
and internal consistence [Hoover & Romero, 2019]. In
the ID literature, an adapted version of the Impact of
Events Scale has shown similarly promising results [Hall,
Jobson, & Langdon, 2014]. Such measures may form a
useful starting point from which to develop and validate
8 Rumball et al./Experience of trauma and PTSD in ASD
trauma and PTSD assessment measures for use in the
adult ASD population. However, a crucial limitation of
questionnaire methodology is that, although self-report
measures can usefully capture levels of symptomatology,
they are not diagnostic. Self-report measures can only
ascertain the level of subjective symptomatology and
questions are open to misinterpretation by the individ-
ual; this may be compounded in populations with com-
munication difficulties such as ASD adults. Clinical
diagnosis of mental health conditions, such as PTSD,
requires an in-depth clinical assessment to make a clini-
cally informed reliable and valid diagnosis. A particular
issue in PTSD diagnosis is the nature of the trauma mem-
ory, establishing whether it is truly re-experienced and
not simply a ruminative process. Future research is
needed to corroborate the current findings by examining
clinical diagnosis of PTSD and the presentation of PTSD
symptom clusters in ASD using gold standard clinician-
led assessments, such as the CAPS-5, administered by cli-
nicians who are experienced in differential diagnosis of
ASD, PTSD, anxiety, and mood disorders. Assessments
using multiple informants and clinical interviews are also
needed to clarify the qualitative nature of the trauma
memories associated with non-DSM-5 trauma.
Future research employing qualitative methods is needed
to gain a deeper understanding of ASD individuals’ experi-
ence of trauma, PTSD symptomatology and any areas (e.
g., social support, religion, recreational or community-
based activities, organizations, charities, and therapeutic
interventions) found to be helpful in recovery. It will be
important to adopt participatory research models and
involve experts-by-experience in the conceptualization of
such a research project, in developing an appropriate set of
questions to form the basis of the interviews and data col-
lection, to make future research on PTSD in ASD maximally
relevant to the autism community.
Clinical Implications
General population research has shown that PTSD can go
undetected if individuals are not asked about the occur-
rence of specific traumas [Solomon & Davidson, 1997]. In
individuals with ASD, for whom socio-communicative dif-
ficulties are a cardinal feature, trauma assessment should
ideally include self-report via standardized trauma check-
lists and clinical interviews, as well as gathering of informa-
tion from different sources and informants. A deductive
approach to PTSD screening could also be employed, in
routinely enquiring as to the presence of cardinal features
of PTSD. Although rumination, arousal, and avoidance are
features overlapping with a range of mental health diagno-
ses, symptoms more specifically associated with PTSD
include vivid recollection-based nightmares [Sheikh,
Woodward, & Leskin, 2003] and multisensory image-based
flashbacks of events that are re-experienced in the present
INSAR
[Ehlers, Hackmann, & Michael, 2004]. Indications of such
symptoms should prompt further enquiry as to any trau-
matic experiences that may be related to these symptoms.
Worryingly, recent statistics suggest that only 10% of ASD
providers in the United States routinely screen for trauma
related symptoms [Kerns et al., 2019]. It is hoped that the
present research will encourage the routine screening of
trauma exposure and PTSD symptomatology in clients
with ASD presenting to clinical services, most of whom will
be experiencing high levels of anxiety and other mental
health challenges. The present findings would also suggest
that clinicians should be ready to consider a wide range of
experiences as traumatic, and concentrate on the subjec-
tive experience of ASD adults; where symptoms meet
criteria for PTSD with re-experiencing of trauma memories
occurring, withholding a diagnosis based on DSM-5 Crite-
rion A risks denying much needed support and treatment.
Conclusions
Adults with ASD described a wide range of life events as
being experienced as traumatic. Findings indicate that
adults with ASD may be at increased risk of PTSD devel-
opment following both traumas meeting DSM-5 PTSD
Criterion A and non-DSM-5 traumatic events that do not
meet Criterion A. Clinical services for adults with ASD
would benefit from routine screening for trauma expo-
sure and assessing PTSD symptomatology in trauma
exposed individuals, allowing for current evidence-based
treatments to be delivered to this potentially at-risk popu-
lation. Further research is needed to develop accessible,
reliable, and valid PTSD assessment measures and appro-
priately adapted, efficient, and effective forms of trauma-
focused therapies to meet the needs of individuals with
PTSD and ASD.
Acknowledgment
We are grateful to the Feasibility and Acceptability Sup-
port Team for Researchers (FAST-R) for reviewing and
commenting on the study protocol.
Conflict of Interest
The authors declare no potential conflict of interest.
Ethical Standards
The authors assert that all procedures contributing to this
work comply with the ethical standards of the relevant
national and institutional committees on human experi-
mentation and with the Helsinki Declaration of 1975, as
revised in 2008.
INSAR Rumball et al./Experience of trauma and PTSD in ASD
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