Psychological Society of South Africa. All rights reserved.

ISSN 0081-2463

South African Journal of Psychology, 41(4), 2011, pp. 424-436

PTSD symptoms in intellectually disabled victims of sexual

assault
Nokuthula Shabalala
Psychology Department, University of Cape Town, South Africa
Nokuthula.Shabalala@uct.ac.za
Aimee Jasson
Clinical Psychologist
The high rates of sexual violence in the country suggest that people with intellectual disabilities (ID)
are likely to be sexually victimised. Rape and sexual assault have negative consequences for
survivors, with Post Traumatic Stress Disorder (PTSD) being the most common psychiatric diagnosis
used to capture the reaction to this trauma. This study sought to investigate the presence of PTSD
symptoms in a group of people with ID who had been sexually abused. The Child PTSD Checklist
was administered to 54 individuals with ID 27 with and 27 without a known history of sexual abuse.
The Checklist was also administered to the care-givers of those who had been sexually abused.
Higher rates of a PTSD diagnosis and a higher intensity of PTSD symptoms were found in the group
with than in the group without a history of sexual abuse. There were no significant differences
between self and care-giver reports with respect to the prevalence of a PTSD diagnosis, but there
were differences on the different symptom clusters. The results indicate that survivors with ID should
be asked directly about their internal subjective experiences, with care-giver reports being used as
collateral information, and that therapeutic interventions following sexual abuse should be offered.
Keywords: care-giver reports; intellectual disability; PTSD; rape; sexual assault; trauma

The World Health Organisation (WHO, 2002) report on violence and health globally indicates that
sexual violence is one of the most widespread crimes across many nations, and South Africa is
described as having the highest rates of sexual violence in a country that is not at war (Moffet, 2006).
In 1999, the Department of Health in South Africa reported that the national prevalence of rape of
women was 7% (as cited in Williams et al. 2007). In their research on multiple trauma and psychological distress based on the South African Stress and Health (SASH) study, Williams et al. (2007)
found that 3.5% of the sample reported rape, with rates being higher in women. In this paper the term
sexual abuse will be used to refer to rape and sexual assault as defined in Chapter 2 of the Criminal
Law (Sexual Offences & Related Matters) Amendment Act, No. 32 of 2007.
Intellectual disability (ID) refers to what the DSM-IV-TR (APA, 2000) and the ICD-10 (WHO,
1992) name mental retardation. ID is defined by significantly below average general intellectual
functioning (an IQ score that is below 70 on a standardised measure), which is accompanied by significant deficits in at least two areas of adaptive functioning. A number of factors related to ID, such
as increased dependency on others for day-to-day care, non-discriminative compliance with demands
from others and communication difficulties, increases such persons vulnerability to various forms
of sexual abuse (Borthwick-Duffy, 1994; Moss, 1998; Peckham, 2007; Prosser & Bromley, 1998;
WHO, 1992). Both international and the sparse local literature point to pervasive abuse of people
with disabilities, with Stimson and Best (1991) reporting that 83% of women and 32% of men with
developmental disabilities have been sexually abused. Mansell, Sobsey and Calder (1992) found that
in their sample of 119 participants, 19.2% suffered abuse once and 53.8% had been abused on numerous occasions. In a study comparing disabled and non-disabled students Reiter, Bryen and
Scachar (2007) found that 40% of the disabled students were sexually harassed and 38% touched in
a sexually inappropriate way, while in the non-disabled group only 16% were harassed and 18%
touched inappropriately.
While estimated rates of sexual abuse of people with ID differ across studies, findings suggest

South African Journal of Psychology, Volume 41(4), December 2011

425

that they are more likely to be sexually victimised than their non-disabled counterparts (Cooke &
Sinason, 1998; Mansell et al., 1992; Peckham, 2007; Reiter et al., 2007). There are no statistics on
sexual crimes against people with ID in South Africa, possibly because accurate rates of rape are
elusive (Jewkes & Abrahams, 2002; Jewkes, Dunkle, Koss, Levin, & Nduna, 2006) and the available
data are not disaggregated for disability. However, in a survey of service organisations in South
Africa, Naidu, Haffejee, Vetten and Hargreaves (2005) found that a high percentage of women with
disabilities were exposed to physical, financial, sexual and emotional abuse. Vetten et al. (2008)
found that approximately 1.9% in a sample of 2068 cases drawn from 11 926 reported rape cases in
Gauteng province in one year had some form of disability.
Research shows that sexual abuse, particularly rape (Foa & Rothbaum, 1998; Yuan, Koss, &
Stone, 2006) has negative consequences for the survivors. International and local research indicates
that, compared to victims of other crimes, rape survivors will experience higher levels of distress
immediately after the event and for an extended period thereafter (Herman, 1992; Kaminer, Grimsrud,
Myer, Stein, & Williams, 2008). While there are ongoing debates about its suitability and adequacy
for describing responses to trauma in different contexts Post Traumatic Stress Disorder (PTSD)
remains the most commonly used way of describing the psychological impact of trauma.
A number of factors are theorised to account for the variable, complex and individualized responses to sexual trauma reported in the literature (Yuan et al., 2006), such as lower socioeconomic
status (Wasco, 2003), pre-existing mental health problems and the subjective distress experienced
by the survivor (Resick, 1993), the role of the survivors cognitions in how the traumatic event is
appraised and processed (e.g. Fao & Rothbaum, 1998; Ehlers & Clark, 2000) and personal variables
like age (McCarthy, 2001; Yule, Perrin, & Smith, 1998). Dosen (2005) suggests that a developmental
approach is more helpful since responses to trauma differ across age groups. McCarthy (2001)
postulates that some of the ways in which children respond to trauma are relevant to an understanding
of PTSD in adults with ID, and Turk, Robbins and Woodhead (2005) argue that the presentation of
PTSD in people with ID is mediated by the level and cause of the disability, as well as their social
circumstances and communication skills. There is also a growing recognition that the context in which
both the trauma and recovery occur will influence the psychological outcomes for the survivor (e.g.
Herman, 1992; Resick, 1993). The ecological model (Bronfenbrenner, 1975) is thus seen as more
helpful for understanding sexual trauma (Harvey, 1996) and the abuse of survivors with ID (Sobsey,
1994), for example by highlighting how factors such as the victim's, age, developmental level and
impaired communication skills influence the development of an abusive relationship and the survivors response.
While there is much research on PTSD in people without ID, there are fewer studies on the
prevalence of PTSD in people with ID. Baily and Andrews (1997, as cited in Cooray & Bakala, 2005)
indicate that PTSD is a well-recognised disorder in people with ID, and Mansell et al. (1992) state
that there is no evidence that people with ID experience trauma differently from individuals without
this disability. However, Moss (1998) argues that there may be different and/or additional symptoms
due to the multifaceted nature of the person's disability. Hollins and Sinason (2000) indicate that in
practice traumatic symptoms are still under-diagnosed in this group, possibly because they may
present with symptoms that have not been reported in people without ID. Atypical symptoms that are
particularly common in survivors with ID include sexually inappropriate behaviour, appetite and sleep
disturbances, loss of previously gained skills, enuresis/encopresis, and aggression as well as challenging and self-injurious behaviours (Allington-Smith, Ball, & Haytor, 2002; Cooke & Sinason, 1998;
Sequeira & Hollins, 2003; Sinason, 2002).
Trauma responses that are similar to those reported in the general population include generalised
anxiety, depression, withdrawal and avoidant behaviour, as well as PTSD (Allington-Smith et al.,
2002; Sequeira, Howlin, & Hollins, 2003; Sinason, 2002). Mitchell and Clegg (2005) report that
sexual abuse survivors with ID present with PTSD but that they may have additional symptoms,

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which may contribute to misdiagnosis. In their case-controlled study Sequiera et al. (2003) found that
35% of their sample had symptoms that fulfilled the criteria for a diagnosis of PTSD. Ryan (1994)
reported that 16.5% of her sample of adults with ID who had been sexually abused met the criteria
for a diagnosis of PTSD. This is contrary to the findings of a retrospective study by Firth et al.
(2001), who found that only one in their sample of twenty had symptoms that met the criteria for a
diagnosis of PTSD, and concluded that there was a limited relationship between being a victim of
sexual abuse and PTSD. These findings may be attributable to the fact that information in the study
was gathered through third parties, generally caregivers, and symptoms may not always be observable
(Ryan, 1994). Informants cannot be completely aware of the internal subjective experience of a
client or of non-visible autonomic symptoms that could be crucial to making a correct diagnosis
(Sequiera et al., 2003: p. 17).
Making a diagnosis of PTSD in people with ID is difficult because the current system is largely
based on the report of the survivor regarding their feelings, thoughts and mood (McCarthy, 2001),
a process that may be difficult for some people with ID. The diagnosis of PTSD requires the presence
of symptoms from three clusters described in the DSM-IV TR (APA, 2000), namely re-experiencing,
avoidance and hyper-arousal. Re-experiencing trauma in the form of re-enactment during play,
nightmares and flashbacks has been found in children (Yule et al.,1999), while nightmares are
common in people with ID, particularly those with severe and profound disability (McCarthy, 2001).
In the avoidance cluster, symptoms of social withdrawal, such as isolation from others and resisting
physical contact, have been reported by Sequeira et al. (2003), Mansell et al. (1992), Sobsey and
Mansell (1994), Murphy, OCallaghan and Clare (2007) and Allington-Smith et al. (2002). Symptoms
of increased arousal are often difficult to perceive and require very careful observation (Sinason,
2002), and symptoms such as excessive activity (Sequeira et al., 2003), distractibility and agitation
(McCarthy, 2001) may be evidence of hyper-arousal.
There is limited research in the field of intellectual disability in South Africa and no local
publications on PTSD in people with ID were found by the authors of this paper. The aim of this
study was to explore the presence of PTSD in a group of intellectually disabled victims of sexual
abuse. This study is part of a larger research project managed by the University of Cape Town (UCT)
in partnership with Cape Mental Health Society (CMHS), a Cape Town based non-governmental
organisation that provides services to people with ID and/or psychiatric problems. In addition to other
services, the organisation offers psycho-legal assessments of intellectually disabled complainants in
sexual abuse court cases through the Sexual Abuse Victim Empowerment (SAVE) programme. Approximately 70% of the SAVE clients come from the Cape Flats townships in Cape Town (C. Bosch,
personal communication, 1 June 2011), whose residents are predominantly African1 and Coloured.
METHOD
This quasi-experimental study, which sought to investigate the presence of PTSD in people with ID,
utilised two groups of people with ID from the same communities, in order to increase the probability
that any symptoms found were due to the sexual abuse.
Participants
The experimental group consisted of a convenient sample of 27 intellectually disabled people who
had been sexually abused and was recruited from a pool of SAVE clients awaiting assessment. The
control group of 27 consisted of a convenient sample of people with ID who lived in the same areas
as the experimental group. They were selected from existing case files by social workers at CMHS.
Inclusion criteria included having a mild or moderate intellectual disability and no known history of
rape or sexual assault. All the participants lived with family members or in supported accommodation
in different suburbs and townships located in the Cape Flats area in Cape Town. At the time of the
interviews, none of the participants were known to be in the process of therapy and had no previously
diagnosed mental disorder. Table 1 presents the demographic profile of the participants.

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427

Table 1. Demographic information of the participants

Experimental group (n = 27)

Control group (n = 27)

Age in years
Mean (SD)
18 (5.56)
28 (11.25)*
Range
11 35
14 52
Race
African
7 (26%)
3 (11%)
Coloured
17 (63%)
21 (78%)
White
3 (11%)
2 (7%)
Indian
0 (0%)
1 (4%)
Gender
Male
3 (11%)
10 (37%)
Female
24 (89%)
17 (63%)
Level of intellectual disability
Mild
11 (41%)
15 (56%)
Moderate
10 (37%)
6 (22%)
Severe
0 (0%)
0 (0%)
Unspecified
6 (22%)**
6 (22%)
*
Missing data for ages = 1 in control group
** Unspecified level of ID in experimental group: Participants did not continue with SAVE assessment
and legal proceedings but were included in research.

Data collection procedure

After gaining permission from the management of CMHS, the caregivers (biological or foster parents,
or relatives who are the primary carers) of SAVE clients and the control group were contacted telephonically and asked to participate in the research project. On agreeing, arrangements were made to
meet at a venue convenient for the participants. The data was collected by two students completing
a Masters degree in Clinical Psychology at UCT and social workers from CMHS who were case
managers for the control group. All the researchers were trained in the administration of all instruments that were used for the project.
The PTSD Checklist was administered to the experimental group and their caregivers by the two
Masters students, while the social workers administered it to the control group. All interviews were
conducted in private at the UCT Child Guidance Clinic, CMHS offices or in the residential homes
of the participants. The questionnaires were administered in either isi-Xhosa, English or Afrikaans
during interviews lasting between 1 hour and 1 hour 30 minutes. To establish inter-rater reliability,
four interviews (14%) were conducted on a first interviewer and second interviewer basis by the
Masters students while the first interviewer administered the questionnaire and coded the responses, the second interviewer listened to and coded the responses independently. Percentage agreement
between the students ranged from 84%98%. To establish inter-rater reliability with the social
workers, the two students conducted interviews with two of the same participants that were interviewed by each social worker. Cases in which inter-rater reliability interviews with the caseworker
could not be done and those where inter-rater reliability was low were excluded. Cases included were
those where percentage agreement between the students and the social workers ranged from 76% to
98%.
Instrument
The Child PTSD Checklist (Amaya-Jackson, Duke University, 1995) is a 28-item list that aims to
elicit PTSD in children and adolescents. The checklist rates the presence of the three clusters of
PTSD symptoms described in the DSM-IV-TR (APA, 2000), namely re-experiencing, avoidance and
hyper-arousal, within the last month. The symptoms are rated on a 4-point Likert scale, with 0 = not

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at all; 1 = some of the time; 2 = most of the time; and 3 = all the time (score = 3). Items scored
as two and three were considered as endorsement of the presence of that particular symptom, as done
by Seedat, Nyamai, Njenga, Vythilingum, and Stein (2004). The checklist was previously used in a
comparative study in Cape Town (South Africa) and Nairobi (Kenya) and showed excellent internal
consistency, good test-retest reliability and good convergent validity (Seedat et al., 2004). The checklist was selected because it was assumed that the mental age was more useful than the chronological
age in this study, and that the mental ages of participants would range between 6 years and 12 years
(ICD-10 age equivalents for mild and moderate ID levels). The checklist was translated and backtranslated into isi-Xhosa and Afrikaans by the Iilwimi Centre, University of the Western Cape.
Data analysis
Microsoft Excel and Statistica software were used for analysis of data. The correlation matrixes for
inter-rater reliability were calculated on Microsoft Excel. Statistica version 8 was used for the main
statistical analysis that was performed on the sample (n = 54). t Tests with separate variance were
used to calculate an estimate of the prevalence of PTSD in the experimental group. Chi-square tests
of contingency were applied to measure the correlation between self- and caregiver-reported symptoms. Lastly, factorial ANOVA was used to identify any differences between the different criteria
(re-experience, avoidance, arousal) when symptoms were self-reported and caregiver-reported.
Ethical considerations
Ethical clearance for the study was obtained from the Humanities Faculty, UCT. Permission to access
the participants was sought and obtained from the management of CMHS. All the researchers signed
an agreement not to disclose participants identities to anyone not involved in the project. The
purpose and nature of the research was explained to the caregivers telephonically and at the first
meeting. Participants were informed that participation was voluntary and that they could withdraw
at any point in the project. Issues of confidentiality were discussed with each individual participant
and upheld within the parameters set by the Health Professions Council of South Africa (HPCSA,
2002). Following explanations about the research project, written consent was obtained from all the
caregivers and those intellectually disabled participants who could give it. Verbal assent was obtained
from the participants with ID who could not give written consent. Arrangements were made with
CMHS for counselling services in cases where the research questions caused distress. None of the
participants are identified in any of the documents related to this study.
RESULTS
Eight participants (30%) who had been sexually assaulted met the criteria for a PTSD diagnosis,
while this was true for only one (4%) in the control group. In order to establish whether this difference between the experimental and control groups was significant, independent t tests by groups
were conducted. Assumptions of normality were upheld for comparison of the two groups.
Levenes test for homogeneity of variance was not upheld (F (1, 51) = 4.23; p = 0.04) and a t
test with separate variance estimates was applied to correct this. The results are presented in Table
2 and indicate a significant difference between the scores of the experimental and control groups.
Individuals who had suffered rape or sexual assault were more likely to score higher on the self-report
PTSD measure than those who had not. The effect size was estimated at = 0.55, which suggests
that the presence of rape or sexual assault is likely to increase the development of symptoms meeting
the criteria for PTSD by 55%.
Table 2 relates to those who met the criteria for full diagnosis, and it was important to explore
how often symptoms occurred on their own. Firstly, a frequency analysis was conducted to determine
the number of scores in the different categories of an item, i.e. scores of 0, 1, 2 and 3 as previously
described. Secondly, a t test was done to compare the total scores of each item for the two groups.

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429

Lastly, the values endorsing a more constant presence of symptom (2 and 3) were grouped together
for each of the items and a t test was done to establish if any differences were present between the two
groups. In cases where Levenes test for homogeneity was not upheld, a t test with separate variance
was applied to correct this. Tables 3, 4 and 5 present the differences on the items for the reexperiencing, avoidance and arousal symptom clusters, respectively.
Table 2. t Test for self-reported PTSD scores by groups

Variable

Experimental
group
(N = 27)

M = 22.16
SD = 13.7
* p < 0.05

Scores

Control
group
(N = 27)

t
separ.
Var.est.

df

p
2-sided

Levene
F(1,df)

p
Levene

Effect
size

M = 14.6
SD = 9.44

2.32

44

0.015*

4.23
(1,51)

0.04

0.55

Re-experiencing
As can be seen in Table 3, significantly more respondents in the experimental group than in the
control group reported feeling upset by thoughts and reminders of the trauma, flashbacks and
physiological reactions when thinking about the trauma most or all of the time but not some of the
time. More participants in the control group reported experiencing symptoms some of the time.
Table 3. Frequency of symptoms and significance of difference between groups
Experimental

Item

1. Nightmares
2. Upset by thoughts
3. Upset by
reminders
4. Rumination
5. Intrusive thoughts/
visualisations
10. Acting out/
repetition
11. Flashbacks
14. Physiological
reaction with
thoughts
26. Guilt
28. Dissociation

Sx some of
the time

Control

Sx most or
Sx most or
all of the Sx some of all of the Likelihood
(df = 2)
time
the time
time

p
(twotailed)

19%
33%
37%

15%
41%
41%

30%
67%
59%

7%
15%
19%

1.407
6.790
3.703

.495
.034*
.157*

30%
39%

15%
15%

57%
30%

11%
4%

0.401
3.339

.819
.188

23%

0%

18%

4%

1.483

.476

15%
36%

15%
28%

15%
42%

0%
4%

6.138
6.388

.046*
.042*

19%
16%

19%
16%

22%
4%

7%
4%

1.530
5.311

.465
.070

Avoidance
There were significant differences between the two groups in the number of respondents endorsing
the presence of four of the symptoms, with more people in the experimental group reporting avoidance of reminders, difficulty retrieving memories of the trauma, emotional numbing and difficulty
doing fun things all or most of the time.

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Table 4. Frequency of symptoms and significance of difference between groups

Experimental
Item

7. Repressing
thoughts
8. Avoidance of
reminders
9. Struggle to
retrieve trauma
memories
12. Emotional
numbing
13. Keeping busy to
avoid thoughts
22. Foreshortened
future
23. Difficulty doing
fun things
24. Anhedonia
25. Isolation

Sx some of
the time

Control

Sx most or
Sx most or
all of the Sx some of all of the Likelihood
(df = 2)
time
the time
time

p
(twotailed)

19%

39%

30%

19%

2.740

.254

26%

44%

33%

15%

6.094

.048*

35%

23%

22%

4%

7.199

.027*

23%

23%

22%

0%

9.708

.008*

24%

36%

15%

15%

5.139

.077

12%

15%

37%

11%

4.861

.088

8%

23%

26%

4%

6.913

.032*

31%
27%

12%
12%

37%
41%

11%
4%

0.238
1.956

.888
.376

Arousal
Significantly more experimental than control group respondents reported a constant presence of
aggression and anger, as can be seen in Table 5.
Table 5. Frequency of symptoms and significance of difference between groups
Experimental
Item

6. Anxiety about
repeated trauma
15. Sleep problems
16. Attention and
concentration
problems
17. Hypervigilence
18. Increased startle
response
19. Agitation
20. Anger for no
reason
21. Aggression
towards others
27. Enuresis

Sx some of
the time

Control

Sx most or
Sx most or
all of the Sx some of all of the Likelihood
(df = 2)
time
the time
time

p
(twotailed)

22%

30%

44%

11%

4.437

.109

26%
19%

19%
19%

26%
30%

4%
4%

3.383
3.708

.184
.157

39%
22%

15%
30%

26%
37%

19%
19%

0.959
1.749

.619
.417

33%
19%

26%
30%

56%
41%

11%
7%

3.362
6.161

.186
.046*

15%

19%

44%

4%

7.598

.022*

30%

7%

33%

4%

0.399

.819

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431

Self-report versus caregiver report

A Chi-squared test of contingency was performed to find the association between self and caregiver
report data for the experimental group. The aim was to identify any differences in the prevalence of
PTSD when reported by the participant or the caregiver. The results showed that there was a high
level of concurrence between self and caregiver report when the symptoms were absent (15 cases),
and there was agreement regarding the presence of symptoms meeting the criteria for a PTSD diagnosis in three cases only. In seven cases, the participants indicated that they experienced PTSD
symptoms, whilst the reports of their caregivers did not concur with this. On the other hand, two of
the caregivers reported symptoms that met a PTSD diagnosis, whilst the self-report did not agree with
this. However, the differences between self-report and caregiver report were not significant ( (1)
= 1.39; p = 0.24).
Although the sample size is small, a non-parametric test would reduce the power of detecting
significant differences between variables. Therefore a factorial ANOVA, a robust test that has more
power to detect group differences, was performed on the different symptom clusters of PTSD (i.e.
re-experiencing, avoidance and arousal) to identify: (1) whether there was any difference between the
number of symptoms reported by the participant and by the caregiver; and (2) whether there were
differences between self- and caregiver reports on specific symptom clusters (Table 6). Levenes test
for homogeneity of variance was upheld for self-report data, F = 0.19, p = 0.82, but not for caregiver-report data, F = 3.84, p = 0.03. To prevent a Type I error, the alpha value was lowered to .01.
Furthermore, the ANOVA is a robust statistical test and it is likely that the tests will still be statistically valid (Donaldson, 1968; Field, 2009).
Table 6. Descriptive statistics for self- and caregiver-reported symptoms according to symptom type
Report type
Level of factor

Symptom Type

Re-experience
Avoidance
Arousal

Main means

N
Caregiver-report

Self-report

Symptom type

22
24
26

2.18 (2.64)
5.29 (4.41)
3.58 (3.44)

7.32 (5.26)
7.83 (5.28)
7.35 (5.18)

4.94 (4.98)
6.47 (4.84)
5.47 (4.65)

72

3.72 (3.76)

7.50 (5.17)

Main Means
Report Type

Table 7 shows the results show the results of the ANOVA. There was no significant difference
in the number of symptoms reported for the different clusters, F (2, 69) = 1.26, p = 0.29. There was,
however, a significant difference in the number of symptoms reported through self-report and through
caregiver report, F (1, 69) = 54.17, p < 0.001, with the participants reporting higher numbers of
symptoms (M = 7.50, SD = 5.17) than their caregivers (M = 3.72, SD = 3.76). There was no
interaction effect between report type and symptom type on the number of symptoms reported F (2,
69) = 2.01, p = 0.14.
DISCUSSION
Existing research has consistently shown that rape and sexual assault are associated with negative
outcomes, including PTSD. The picture is less clear in intellectually disabled people. In this study
a higher percentage of people who had been sexually abused had symptoms that met the DSM-IV TR
(APA, 2000) criteria for PTSD. Although the rates were below the 35% found by Sequeira et al.

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Table 7. Results for the repeated measures ANOVA for the effects of symptom type (re-experience,
avoidance, arousal) and report type (self, caregiver) on number of reported symptoms
SS
Symptom Type
Error
Report Type
Report Type*Symptom Type
Error

77.24
2121.99
521.73
38.64
664.58

df

MS

2
69
1
2
69

38.62
30.75
521.73
19.32
9.63

1.26

0.2913

0.04

54.17
2.01

<0.0001
0.1423

0.44
0.05

(2003), they were higher than the 16.5% reported by Ryan (1994) and the 5% found by Firth et al.
(2001). Contrary to Firth and colleagues conclusion that there was a limited relationship between
being a victim of sexual abuse and PTSD, the findings rather support Turk et al.s (2005) argument
that PTSD should be considered in intellectually disabled people who have suffered any serious
trauma and subsequently present with challenging behaviour and changes in their emotional states.
Regarding the presence of symptoms, while the control group reported these in relation to events
such as serious illness or death of a close other, these appear to have resulted in less intense responses
than in those who had been sexually abused. In particular, re-experiencing symptoms such as
flashbacks, physiological responses and being upset at reminders were reported as present all or most
of the time by the experimental group, which is in line with findings from research on children and
people with ID (McCarthy, 2001; Yule et al., 1999). Flashbacks and feeling upset by thoughts or
reminders of the trauma are experienced subjectively and may be missed in people with ID who are
not able to communicate this verbally (Sequiera et al., 2003) or if they are not asked directly, thus
contributing to possible misdiagnosis (Hollins & Sinason, 2000; Turk et al., 2005). While physiological responses may be observable, caregivers would have to be knowledgeable and very observant
to notice behavioural indications of flashbacks and physiological responses to reminders of the
trauma.
Avoidance symptoms like problems with accessing memories of the trauma, avoidance of reminders and emotional numbing, were also reported as being present most or all of the time by more
of the experimental group. These are different from the avoidance symptoms that are more commonly
reported in the ID literature, such as isolation and resisting physical contact (Sequiera et al., 2003;
Sobsey & Mansell, 1994; Murphy et al., 2007). The commonly reported ones manifest in the
interpersonal space and are thus more observable by caregivers, while the symptoms found in this
study are more internally experienced. The higher reports of a more constant presence of anger and
aggression by the group that had been sexually abused is not surprising, as the literature (e.g. McCarthy, 2001; Sequeira et al., 2003; Sinason, 2002) indicates that emotional and psychological
distress in people with intellectual disabilities often manifests as behavioural challenges. While
behavioural changes may be more easily noted, their links to the traumatic event may not be adequately understood.
Although there were no significant differences in reported symptom clusters between the experimental group and their caregivers, relatively more people with ID reported higher levels of PTSD
symptoms, thus meeting a diagnosis for PTSD, than the report that was given by their caregivers. This
is not surprising as the Checklist generally probes internal states, with most symptoms not necessarily
being immediately apparent to an external observer. This would support Prosser and Bromleys
(1998) argument that there is an increased likelihood of obtaining valid information about the
psychological experiences of the intellectually disabled person when it is elicited from the person
themselves. While essential as collateral information, it may not be enough to rely entirely on caregiver reports of the trauma, as these may be biased due to factors like the caregivers needing to
minimise the effect of the trauma (Allington-Smith et al., 2002), not having access to the survivors

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433

internal psychological experience (Sequiera et al., 2003), or even reporting perceptions of inadequacies or coping deficits which may be unrelated to the internal experience of the individual (Lunsky
& Bramston, 2006). However, the findings from this study suggest caregiver reports are valuable as
they did report PTSD symptoms. This is particularly helpful where the severity of the disability
prevents self reporting, and suggests that rather than taking an either/or approach, there is more to be
gained from exploring trauma reactions with both the survivor and significant others. Although they
may not be able to report on the persons internal states (Moss, 1998), caregivers observe the individual on an on-going basis and can provide valuable insights regarding changes in the individual.
While this study was particularly interested in responses to sexual abuse, the findings of a
presence of PTSD symptoms some of the time in the control group was unexpected. Similar to the
experimental group, the symptoms most commonly reported in the control group were internal ones,
such as being upset by thoughts and reminders of the event as well agitation, anger and aggression..
The results point to the presence of PTSD symptoms even in those who may not necessarily have
been sexually abused. All the participants in this study come from the Cape Flats areas, which are
characterised by high levels of poverty, drug abuse and violent crimes. While this was not explored,
some of the PTSD symptoms may represent reactions to environmental events such as traumatic
bereavements and interpersonal violence.
The findings have implications for service provision. People with ID who have been sexually
abused need therapeutic help which is accessible and usable. It is also important that those who work
with survivors who have ID do not make assumptions about what they can or cannot do, but involve
them as much as possible in issues related to their well-being. In addition, events such as the loss of
loved ones have psychological effects, and people with ID need to be thought about when traumatic
events of any kind occur in their lives. Educating caregivers on the impact of stressful events on
people with ID would be beneficial.
There are a number of limitations to the study. This research was undertaken with the goal of
being explorative and had a small sample, thus the limiting the extent to which the findings can be
generalised. The Checklist used is based on the DSM-IV-TR definition of PTSD, thus other symptoms of the sexual trauma found in people with ID were not elicited. It is very likely that different
methodological approaches and/or instruments would yield different results. Another limitation is that
factors that influence the development of PTSD, such as the number and nature of abuse incidents,
the onset and duration of symptoms, pre-trauma vulnerability and the post-trauma environment, were
not controlled for. More importantly, there were differences among participants in the time that had
elapsed between the sexual abuse and the data collection. Time limits could not be set, as the process
of referral to the SAVE project is dependent on other legal proceedings and is often lengthy. In some
cases, the abuse had occurred as far back as 2006, which would thus influence the presence and
severity of the symptoms reported.
CONCLUSION
Given the pervasive gender violence in South Africa and the vulnerability of people with intellectual
disability, it is necessary to understand and begin to address the impact of sexual trauma in people
with ID, who are particularly at risk because of factors related to their disability. It is only recently
that the psychological impact of trauma in people with ID has been the subject of research internationally, but this has not been the case locally. In seeking to understand responses to sexual trauma
and PTSD as it manifests in the South African context, it is important to include people with ID, as
findings from studies have policy implications with respect to providing appropriate interventions.
The findings of this study suggest that rape and sexual assault are just as traumatically experienced
by those with ID. In addition, the report of symptoms in the control group suggests that even nonsexual traumatic events results in some psychological distress in people with ID. Given the multiple
challenges faced by intellectually disabled people generally, and those who have been exposed to

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trauma in particular, it is important to think about service provisioning for the mental health needs
of people with ID.
NOTE
1.

While acknowledging the controversial issues around racial categorisation, it was deemed necessary in this
study to use the categories White, Indian/Asian, Coloured and African as defined in the South African
Population Classification Act, because these influence social realities, such as access to resources, of the
population. The term black, where used, will refer to all groups that are not classified as white.

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