The British Journal of Psychiatry (2008)

193, 364–372. doi: 10.1192/bjp.bp.107.044461

Intellectual disability co-occurring with

schizophrenia and other psychiatric illness:
population-based study
Vera A. Morgan, Helen Leonard, Jenny Bourke and Assen Jablensky

Background
The epidemiology of intellectual disability co-occurring with disability had co-occurring schizophrenia. Pervasive
schizophrenia and other psychiatric illness is poorly developmental disorder was identified through the
understood. The separation of mental health from intellectual Intellectual Disability Register and is therefore limited to
disability services has led to a serious underestimation of the individuals with intellectual impairment. None the less,
prevalence of dual diagnosis, with clinicians ill-equipped to pervasive developmental disorder was more common among
treat affected individuals. people with a dual diagnosis than among individuals with
intellectual disability alone. Down syndrome was much less
Aims prevalent among individuals with a dual diagnosis despite
To estimate the prevalence of dual diagnosis and describe its being the most predominant cause of intellectual disability.
clinical profile. Individuals with a dual diagnosis had higher mortality rates
and were more disabled than those with psychiatric illness
Method
alone.
The Western Australian population-based psychiatric and
intellectual disability registers were cross-linked (total Conclusions
n=245 749). The facility to combine records across administrative
jurisdictions has enhanced our understanding of the
Results epidemiology of dual diagnosis, its clinical manifestations and
Overall, 31.7% of people with an intellectual disability had a aetiological implications. In particular, our results are
psychiatric disorder; 1.8% of people with a psychiatric illness suggestive of a common pathogenesis in intellectual disability
had an intellectual disability. Schizophrenia, but not bipolar co-occurring with schizophrenia.
disorder and unipolar depression, was greatly over-
represented among individuals with a dual diagnosis: Declaration of interest
depending on birth cohort, 3.7–5.2% of those with intellectual None. Funding detailed in Acknowledgements.

Intellectual disability (overlapping terms: intellectual handicap, The current work presents a population-based approach to the
mental retardation, developmental disability and learning dis- study of co-occurring intellectual disability and psychiatric illness
ability) covers a variety of clinical presentations, syndromes and – ‘dual diagnosis’ in its original rather than its more recently
underlying pathologies.1 Its overall population prevalence is acquired meaning of psychiatric illness and comorbid drug and
estimated to be approximately 1.0%, but may vary depending alcohol misuse.3 This study has linked two population-based
on the age structure of the population under investigation owing registers maintained in separate administrative health jurisdictions
to differential mortality rates and under-ascertainment in adult in Western Australia (current population 2.1 million), namely the
populations.2 Australian data put the lifetime prevalence for adults Mental Health Information System and the Intellectual Disability
aged 15–64 years at 1.3%,3 while in Western Australia it has been Register in order to:
estimated at 14 per 1000 live births.4 Most studies have found that (a) estimate the prevalence of psychiatric disorders among people
the risk of psychiatric disorder is increased among people with with intellectual disability and, conversely, the prevalence of
intellectual disability, although the reported prevalence varies intellectual disability among people with a psychiatric disorder
greatly due to methodological and nosological problems which
affect the reliability of estimates; these include the criteria used (b) describe the disability and service utilisation profile of people
to assign intellectual disability status and level and to ascertain with a dual diagnosis.
psychiatric morbidity, as well as issues of sample size, source,
age and bias.5–7 Of underlying significance is the fact that the Method
identification of mental illness in individuals with intellectual
disability is difficult.5 As a result, the epidemiology of intellectual The Intellectual Disability Register was established in 1953. As
disability co-occurring with psychiatric illness remains poorly registration is necessary for receipt of services, coverage of the
understood.8 Some specific associations have been reported. In register is good, rising with age. It is estimated to cover over
particular, there appears to be an elevated lifetime risk of schizo- 75% of Western Australian cases, with under-ascertainment most
phrenia among individuals with intellectual disability. In 1938, likely to affect borderline cases. At the time of data linkage, it
Penrose reported that 3.8% of 1280 individuals with intellectual included 11 576 individuals who met eligibility criteria based on
disability had schizophrenia and 1.9% had affective psychoses;9 American Association on Mental Retardation criteria11 including
current estimates still put the risk of schizophrenia in intellectually a full-scale IQ score greater than or equal to 2 standard deviations
disabled populations at around 3%,5,10 compared with a lifetime below the population mean in combination with limitations in
population risk of around 1%. adaptive behaviours and skills. IQ up to 74 may be included in

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 Intellectual disability and schizophrenia

cases of severe limitations in adaptive behaviours and skills. Level major depression. Dual diagnosis cases were those with both
of intellectual handicap is recorded as borderline (IQ 70–74), intellectual disability and a psychiatric illness as defined above.
mild (IQ 50–55 to 69), moderate (IQ 35–40 to 50–54), severe For the purposes of this study, individuals were identified as
(IQ 20–25 to 35–39), profound (IQ 520–25) or unspecified. having a pervasive developmental disorder (autism, Asperger
The register uses the Heber system to classify the type of syndrome, Rett syndrome or unspecified) on the basis of such
intellectual disability.12 As this system is quite old, three of the diagnoses being recorded on the Intellectual Disability Register
authors (V.M., H.L. and J.B.) rearranged the Heber codes into alone. Thus, all identified cases of pervasive developmental dis-
groups that were more consistent with current classification order had IQs within the intellectual disability range. These
systems. These groups indicate the likely aetiological basis of the individuals were only counted as having a dual diagnosis if they
intellectual disability, based broadly on categories developed by also had an ICD–9 diagnosis of mental illness. Although there
Yeargin-Allsopp.13 They include: genetic (X-linked, other chromo- was some potential overlap with the ICD–9 code 299 (childhood
somal, other), metabolic, teratogenic (congenital infections, psychosis) on the psychiatric register, the vast majority (89%) of
chemical agents), central nervous system defect, other birth individuals with pervasive developmental disorder on the
defect, neonatal/post-neonatal, perinatal and multifactorial Intellectual Disability Register had a diagnosis of mental illness
causes; associated conditions were also recorded. There is also a other than childhood psychosis. Likewise, individuals were
field on the register for recording psychiatric comorbidities. The identified as having problem behaviours only if they had problem
Mental Health Information System is a psychiatric case register behaviours recorded on the Intellectual Disability Register. Thus,
that records all in-patient and ambulatory care contacts with pub- all cases of problem behaviour also had IQs within the intellectual
lic mental health services since 1966, as well as admissions to pri- disability range. These individuals were only counted as having a
vate hospitals, but not services provided by general practitioners dual diagnosis if they also had an ICD–9 diagnosis of mental
and private psychiatrists;14 at the time of linkage it included illness.
records for 236 973 persons who met the study criteria (outlined Because cross-linkage of registers identified both duplication
below). As the register uses different versions of the ICD classifi- of individuals across registers as well as additional cases of
cation system ranging from ICD–8 to ICD–10–AM, depending on intellectual disability, psychiatric disorder or dual diagnosis, the
year of diagnosis, an algorithm was written by the first author to final research database of 245 749 persons is not simply the sum
translate all diagnoses into their ICD–9 equivalents.15 of the combined categories on the individual registers.
Individual records on the two registers were linked using
probabilistic data matching strategies; the methodology used to
Data validation
link records across Western Australian health registers, and its
validation, have been published.16 Two diagnostic categories have Data on the Intellectual Disability Register have been compre-
potential overlap across the two registers. The category pervasive hensively cleaned for people born 1983 onwards.4 Manual checks
developmental disorder was determined using Heber data on the of clinical files were undertaken for older records if level of
Intellectual Disability Register only. This conservative approach intellectual disability or Heber diagnosis was missing. Currently,
ensured better uniformity by including only those cases with 84% of cases of intellectual disability with a genetic basis are
co-occurring intellectual disability. The vast majority (89%) of cytogenetically assessed: 12% of these have been assessed in more
cases of pervasive developmental disorder in the dual-diagnosis recent years only. Validation of the psychiatric case register was
group had an ICD–9 diagnosis on the psychiatric register other undertaken independently of this study.14
than childhood psychosis. A person on the Intellectual Disability
Register with problem behaviours was not counted as having Analysis of the data
conduct disorder unless this was recorded on the psychiatric
Several analyses used whole-of-population data. Others were
register.
restricted to two birth cohorts: individuals born 1950–64 and
To be selected into the intellectual disability arm of the study, a
1965–79. The use of two birth cohorts allowed for a more compre-
person had to meet American Association on Mental Retardation
hensive assessment of the impact of period effects, such as
criteria. For this study, this was extended to include borderline level
changing diagnostic or service trends, on the data. Cohort years
of intellectual disability with IQ scores of 70–74; some 12%
were selected to maximise the probability of cohort members
(n=1607) of all individuals with an intellectual disability were
passing through the most critical risk period for onset of psychosis
classified as borderline. Individuals on the psychiatric case register
(late adolescence to early adulthood), while minimising reliance
with an ICD diagnosis of mental retardation were also classified as
on older data collections and classifications on the Intellectual
intellectually disabled. The criterion for selection into the psychi-
Disability Register. At the time of data extraction (February
atric arm of the study was having at least one ICD–9 Chapter 5
2003), the age range for the older birth cohort was 38–52 years
(mental disorder) diagnosis. People on the psychiatric register
and, for the younger birth cohort, 23–37 years. Calculation of
with a diagnosis of mental retardation only were retained as
incidence rate ratios and their confidence intervals was based on
intellectually disabled but not included as having a co-occurring
Rothman & Greenland.17 All other analyses used SPSS 14.0
psychiatric illness. If a person had psychiatric comorbidity
including chi-squared analyses, logistic regression to calculate
recorded on the Intellectual Disability Register but no ICD–9
odds ratios, and survival analysis to estimate confidence intervals
diagnosis on the psychiatric case register they were coded as
for median age at first contact with services. Significance levels
having a psychiatric illness not otherwise specified. As an
were set at P50.05; Bonferroni correction was not applied given
individual on the psychiatric case register could have multiple
the exploratory and descriptive nature of the paper.
psychiatric diagnoses assigned over time, we selected the last
diagnosis recorded on the register as the project diagnosis for that
person. The main diagnostic categories used in analysis were: Results
schizophrenia (ICD–9 295), bipolar disorder (ICD–9 296.0 and
296.2–5), and unipolar (major) depression (ICD–9 296.1, 296.6, The study database combined records from both registers and
296.8 and 296.9), as well as an aggregated category, any consisted of 245 749 individuals: 232 454 with a record of
non-organic psychosis that combines ICD–9 295–298 including psychiatric illness only, 9074 with intellectual disability only, and

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Morgan et al

4221 with co-occurring psychiatric illness and intellectual dis- disability services later than those with intellectual disability alone:
ability. Of the individuals with intellectual disability, 31.7% had at a median age of 11 years compared with 7 years for the 1950–64
a psychiatric disorder and 1.8% of individuals with a psychiatric birth cohort, and at 7 years compared with 3 years for the 1965–79
illness had intellectual disability. Analysis by birth cohort birth cohort. The difference between the two cohorts may be
produced figures similar to the full data-set, albeit increasing over largely artefactual as the Intellectual Disability Register was only
time. Had we relied on the Intellectual Disability Register alone, started in 1953.
only 12.3% of people with intellectual disability would have been Finally, we examined mortality risk for people with a dual
identified as having psychiatric morbidity (1428 out of 11 576 per- diagnosis compared with people with intellectual disability only.
sons), and had we relied on the psychiatric case register alone, Mortality risk was significantly elevated in the intellectual dis-
only 1.0% (2288 of the 235 692 individuals with psychiatric illness, ability only group in both birth cohorts, with mortality incidence
excluding 1281 people with intellectual disability alone) would rate ratios of 1.4 (95% CI 1.1–1.8) for the 1950–64 birth cohort
have been identified as also having intellectual disability (Table 1). and 2.8 (95% CI 2.1–3.6) for the 1965–79 birth cohort. The
To assess the impact of the inclusion of borderline intellectual distribution of age at death also differed between groups with
disability, and to allow comparison with studies in which it is not those with a dual diagnosis being significantly older at the time
included, the analysis was repeated without these cases. The of their death than individuals with intellectual disability only.
percentage of individuals with a psychiatric illness among those The mean difference was 13 years for the older cohort and 11 years
with intellectually disability rose very marginally to 32.0% for for the younger cohort.
the full database, and the percentage of those with an intellectual
disability among individuals with a psychiatric illness fell slightly Dual diagnosis compared with psychiatric illness
to 1.6%.
alone
The distribution of selected psychiatric disorders among
people with intellectual disability, and the distribution of intellec- When compared with people with psychiatric illness only,
tual disability among people with selected psychiatric disorders individuals with dual diagnosis were younger at the time of their
are shown in Table 2. first contact with psychiatric services and at their first (if any)
in-patient admission (Table 4). They were more likely to have had
an in-patient admission, and those who had been admitted to
Dual diagnosis compared with intellectual disability hospital had more admissions and had spent more days in
alone hospital, all suggestive of a more severe psychiatric illness
Intellectual disability profiles of people with a dual diagnosis were (Table 5).
compared with those for people with an intellectual disability and The mortality risk for individuals with a dual diagnosis was
no co-occurring psychiatric illness. Level of handicap was significantly increased over that for people with psychiatric illness
differentially distributed depending on dual diagnosis status. alone, with mortality rate ratios of 2.3 (95% CI 1.9–2.8) for the
Individuals with a dual diagnosis were significantly more likely 1950–64 birth cohort and 2.2 (95% CI 1.7–2.9) for the 1965–79
to have IQ levels in the borderline and mild ranges (64.3% of birth cohort.
those with a dual diagnosis compared with 53.6% of those with
intellectual disability alone) and less likely to be severely or Dual diagnosis and borderline intellectual disability
profoundly affected (9.2% compared with 18.3%). Fourteen per cent of people with a dual diagnosis had an IQ level
Individuals with a dual diagnosis had a different presumed in the borderline range (70–74). This group was compared with
aetiological basis to their intellectual disability compared with the other dual diagnosis cases. The basis of intellectual disability
people with intellectual disability alone. In those with a dual in the borderline group was significantly less likely to be attributed
diagnosis it was significantly less likely to be attributed to a genetic to genetic or known biomedical origin including metabolic or
cause (odds ratio (OR)=0.4, 95% CI 0.3–0.5 for both birth teratogenic effects and birth defects (12.1% v. 20.8%, P50.001).
cohorts). In particular, Down syndrome was much less prevalent This group was also significantly less likely to have associated
in those with dual diagnosis (OR=0.1, 95% CI 0.1–0.2 for both epilepsy or to have pervasive developmental disorder or Down
birth cohorts). For Down syndrome with co-occurring psychiatric syndrome (there were no cases of Down syndrome). The distribu-
illness, the most frequent disorder was ‘psychiatric disturbance’ to tion of schizophrenia and bipolar disorder was similar in both
which no specific diagnosis was attached. Notably, in the whole- groups, but the borderline group was significantly more likely to
of-population data for Down syndrome there were only four include people with unipolar depression. Even though both
individuals with a record of psychotic illness, including one with groups had a similar rate of psychiatric admissions, the borderline
schizophrenia. On the other hand, pervasive developmental group had spent only half as much time in hospital.
disorder (autism, Asperger or Rett syndrome, or unspecified)
was significantly more frequent in the dual-diagnosis group than
in the intellectually-disabled group (OR=5.9, 95% CI 2.6–13.3 for Intellectual disability with co-occurring schizophrenia
the 1950–64 birth cohort; OR=3.7, 95% CI 2.1–6.7 for the 1965– Over one in ten of individuals with dual diagnosis (485/4221) had
79 birth cohort), and a sizeable proportion of this dual-diagnosis intellectual disability with co-occurring schizophrenia (16.1% of
group (43.3% of the 1950–64 cohort and 21.6% of the 1965–79 individuals with a dual diagnosis born 1950–64 and 10.6% of
cohort) had had a lifetime-ever diagnosis of psychosis recorded. those born 1965–79). The percentage of all individuals with
The aetiological attribution of intellectual disability is tabulated intellectual disability who developed schizophrenia was 5.2% for
by dual diagnosis status in Table 3. the 1950–64 birth cohort and 4.5% for the 1965–70 birth cohort.
Most people with a dual diagnosis had made contact with Conversely, 5.2% of all people with schizophrenia in the 1950–64
disability services prior to contact with mental health services birth cohort and 3.7% in the 1965–79 birth cohort had intellectual
(82.8% in the 1950–64 birth cohort and 62.7% in the 1965–79 disability (Table 2).
birth cohort). On average, it was another 10–11 years before they The disability profile for this dual-diagnosis group with
were seen by mental health services. At the same time, however, schizophrenia contrasted sharply with that of individuals who
individuals with a dual diagnosis were making first contact with had no co-occurring psychiatric illness, with three-quarters

366
 Table 1 Post-and pre-linkage distribution of intellectual disability, psychiatric illness and dual diagnosis for whole-of-population data and by birth cohort
Post-linkage Pre-linkage
Intellectual disability Psychiatric case
Whole of population 1950–1964 birth cohort 1965–1979 birth cohort register (unlinked) register (unlinked)
n as % of n as % of n as % of n as % of n as % of n as % of
13 295 cases 236 675 cases 3225 cases 57 988 cases 3339 cases 50 992 cases
n with ID with PI n with ID with PI n with ID with PI n % n %

Dual diagnosis 4221 31.7 1.8 1036 32.1 1.8 1184 35.5 2.3 1428 12.3 2288 1.0
Intellectual disability only 9074 68.3 – 2189 67.9 – 2155 64.5 – 10 148 87.7 1281 0.5
Psychiatric illness only 232 454 – 98.2 56 952 – 98.2 49 808 – 97.7 – – 233 404 98.5
Total % – 100.0 100.0 – 100.0 100.0 – 100.0 100.0 100.0 100.0
Total n 245 749 – – 60 177 – – 53 147 – – 11 576 – 236 973 –

ID, intellectual disability; PI, psychiatric illness.

Table 2 Dual diagnosis as a percentage of total number of individuals with specified psychiatric illness and any intellectual disability for whole-of-population and by birth cohort
Whole of population 1950–1964 birth cohort 1965–1979 birth cohort
Dual diagnosis Dual diagnosis Dual diagnosis
Dual Specified Dual diagnosis with specified PI Dual Specified Dual diagnosis with specified PI Dual Specified Dual diagnosis with specified PI
diagnosis PI as % of as % of all ID diagnosis PI as % of as % of all ID diagnosis PI as % of as % of all ID
n n specified PI n=13 295 n n specified PI n=3225 n n specified PI n=3339

Schizophrenia 485 11 520 4.2 3.6 167 3190 5.2 5.2 125 2767 4.5 3.7
Bipolar disorder 112 8556 1.3 0.8 38 2686 1.4 1.2 32 1831 1.7 1.0
Unipolar depression 95 15 000 0.6 0.7 30 4359 0.7 0.9 29 3880 0.7 0.9
Psychosis (lifetime) 1115 60 206 1.9 8.4 358 15 772 2.3 11.1 347 13 722 2.5 10.4
Any psychiatric illness 4221 236 675 1.8 31.7 1036 57 988 1.8 32.1 1184 50 992 2.3 35.5

ID, intellectual disability; PI, psychiatric illness.

367
Intellectual disability and schizophrenia
Morgan et al

Table 3 Aetiological attributions of intellectual disability (ID) in individuals with a dual diagnosis compared with those with
intellectual disability only, for whole-of-population and by birth cohort a
Whole of population 1950–1964 birth cohort 1965–1979 birth cohort
Dual diagnosis ID only Dual diagnosis ID only Dual diagnosis ID only
n (%) n (%) n (%) n (%) n (%) n (%)

Aetiological factors
Chromosomal: Down syndrome 97 2.3 1285 14.2 18 1.7 270 12.3 23 1.9 327 15.2
Chromosomal: sex-chromosome linked 86 2.0 182 2.0 15 1.4 38 1.7 37 3.1 65 3.0
Chromosomal: other specified autosomal 35 0.8 138 1.5 5 0.5 8 0.4 6 0.5 32 1.5
Genetic: other or not specified 155 3.7 520 5.7 22 2.1 93 4.2 53 4.5 164 7.6
Metabolic disorders 48 1.1 149 1.6 16 1.5 42 1.9 18 1.5 45 2.1
Teratogenic 67 1.6 191 2.1 13 1.3 44 2.0 27 2.3 48 2.2
Central nervous system defect 84 2.0 326 3.6 15 1.4 56 2.6 27 2.3 90 4.2
Other birth defect 13 0.3 34 0.4 5 0.5 12 0.5 3 0.3 6 0.3
Other predisposing factors
Maternal medical condition 79 1.9 167 1.8 20 1.9 58 2.6 26 2.2 50 2.3
Intra-uterine growth related 81 1.9 219 2.4 16 1.5 32 1.5 29 2.4 68 3.2
Labour/delivery complications 64 1.5 217 2.4 27 2.6 106 4.8 16 1.4 40 1.9
Perinatal complications 157 3.7 435 4.8 51 4.9 119 5.4 43 3.6 102 4.7
Neonatal/postnatal complications 252 6.0 565 6.2 76 7.3 173 7.9 70 5.9 168 7.8
Other including psychosocial factors 391 9.3 648 7.1 109 10.5 164 7.5 103 8.7 168 7.8
No specified cause 980 23.2 2505 27.6 266 25.7 750 34.3 236 19.9 511 23.7
Associated conditions
Epilepsy or convulsions 664 22.0 1476 17.3 158 21.6 367 17.7 175 20.7 383 18.5
Cerebral palsy 47 1.1 138 1.5 13 1.3 17 0.8 18 1.5 49 2.3
Sensory defect 405 9.6 1113 12.3 84 8.1 241 11.0 107 9.0 294 13.6
Autism 152 3.6 322 3.5 4 0.4 2 0.1 12 1.0 4 0.2
Asperger syndrome 11 0.3 6 0.1 0 – 0 – 1 0.1 1 0.0
Rett syndrome 14 0.3 27 0.3 1 0.1 2 0.1 4 0.3 11 0.5
Pervasive developmental disorder 137 3.2 120 1.3 21 2.0 6 0.3 22 1.9 1 0.0
(unspecified)

a. An individual may have up to three attributions recorded in the Heber classification fields on the intellectual disability register.

(72.4%) assessed as borderline or mild (compared with half of cumulated total of in-patient days despite the fact that the
people solely with intellectual disability) and only 4.9% severely percentage with at least one admission was similar for both
or profoundly affected. The diagnostic profile for those with groups. This pattern also held true for the 1965–79 birth cohort
intellectual disability with co-occurring schizophrenia also (Table 5).
differed from that for people with schizophrenia only. Over their
lifetime of contact with psychiatric services, individuals with a
dual diagnosis ultimately diagnosed with schizophrenia were more Discussion
likely initially to have been given diagnoses of paranoid psychoses
(33.2% v. 25.6%); personality disorders (22.5% v. 12.7%); This work represents one of the most comprehensive whole-of-
psychotic and non-psychotic organic disorders (25.2% v. 9.4%); population studies of the epidemiology of dual diagnosis. Using
acute reaction to stress or adjustment reaction (26.8% v. record linkage across health jurisdictions in Western Australia,
12.9%); specific delays in development (14.6% v. 0.8%); we found that almost a third of individuals with intellectual
disturbance of conduct (13.2% v. 2.1%); neurotic disorders disability had concurrent psychiatric morbidity, and nearly 2%
(21.0% v. 15.9%); and depressive disorders (15.3% v. 7.9%). of people with a psychiatric illness also had intellectual disability.
Moreover, this group was significantly younger at first contact Had the study relied on single register data, the figures would have
with mental health services and at first admission compared with been much lower, seriously underestimating the size of the
those with schizophrenia alone (Table 5). There was no difference problem of dual diagnosis in the population. Total psychiatric
between the two groups in mortality risk, with mortality rate morbidity in intellectually disabled populations is comparable
ratios of 1.0 (95% CI 0.6–1.7) for the 1950–64 birth cohort and with general population estimates of lifetime prevalence of
1.1 (95% CI 0.5–2.5) for the 1965–79 birth cohort. However, 41.2%.18 A recent paper reported a point prevalence of 40.9%
individuals with a dual diagnosis were more likely to attempt for an intellectually disabled population, and estimated a likely
suicide or serious self-harm (24.0% v. 17.4% for the older birth range of 30–50%.7 Our figure may still be an underestimate due
cohort; 28.0% v. 19.6% for the younger birth cohort). For the to the omission of cases seen by general practitioners as well as
most part, people with intellectual disability and co-occurring diagnostic overshadowing. There are few epidemiological studies
schizophrenia used psychiatric services more than the of dual diagnosis for comparison in Australia or elsewhere. The
schizophrenia-only group, and more than the group with only population data on psychiatric illness in adults who are
intellectual disability and co-occurring psychiatric illness of any intellectually disabled in Australia are 6-month prevalence
kind. In the 1950–64 birth cohort, compared with individuals estimates, with figures of 1.3% for psychotic disorders, 8% for
with schizophrenia only, cases of dual diagnosis with depressive disorders and 14% for anxiety disorder.3 However,
schizophrenia had a slightly higher admission rate but twice the the use of lay interviewers employing an instrument not validated

368
 Intellectual disability and schizophrenia

Table 4 Age at first psychiatric contact and at first in-patient admission for people with a dual diagnosis compared with those
with psychiatric illness only (for whole of population)
Age at first psychiatric contact Age at first in-patient admission
Dual diagnosis Psychiatric illness only Dual diagnosis Psychiatric illness only
Median (95% CI) Median (95% CI) Median (95% CI) Median (95% CI)

Schizophrenia 23.8 (22.6–24.9) 30.1 (29.7–30.5) 24.5 (23.1–25.9) 30.4 (30.0–30.8)

Bipolar disorder 26.9 (25.1–28.7) 35.0 (34.6–35.4) 30.0 (27.4–32.6) 35.6 (35.1–36.1)
Unipolar depression 26.6 (25.1–28.1) 36.4 (36.0–36.8) 29.5 (23.9–35.1) 38.6 (38.1–39.1)
Psychosis (lifetime) 23.6 (22.8–24.4) 35.5 (35.3–35.7) 24.8 (23.9–25.6) 36.7 (36.4–36.9)
Any psychiatric illness 18.8 (18.3–19.2) 32.2 (32.1–32.3) 22.5 (21.9–23.1) 36.8 (36.7–37.0)

for use with intellectually disabled samples (Composite Inter- The nature of the link
national Diagnostic Interview) may have affected estimates. On
the other hand, fourth-wave data for a cohort of Australian The prevalence of intellectual disability among persons with
children who were intellectually disabled aged 19–31 indicated schizophrenia, at 5.2% for the 1950–64 birth cohort and 4.5%
that 31% (down from 41% 11 years earlier) met criteria for major for the 1965–79 birth cohort, was considerably higher than the
psychopathology including behavioural and emotional problems Western Australian population estimate for intellectual disability
using an instrument developed specifically for intellectually of about 1.4%. It is close to Kraepelin’s original estimate25 that
disabled populations.19 the basis of some 3.5% of cases of dementia praecox is mental
retardation resulting in an early onset form of psychosis, which
he called ‘Pfropfschizophrenie’ (engrafted schizophrenia). The
high frequency of co-occurring schizophrenia and intellectual
Intellectual disability co-occurring with psychotic disability in our study poses a question as to the underlying basis
illness of the association. Theories proposed include: a chance associa-
We found that, at 5.1% for the older cohort and 3.7% for the tion; a de novo ‘hybrid’ condition; a severe schizophrenia; or a
younger cohort, the prevalence of schizophrenia among common aetiology.26 Since Kraepelin’s early observations of
individuals with an intellectual disability was not only at least cognitive impairment as an essential feature of dementia praecox
three times higher than population lifetime estimates (most cumulating evidence from clinical and epidemiological studies has
recently 1.26%),20 but also higher than the commonly quoted provided compelling support for the latter view. Compromised
estimate of 3% for schizophrenia among intellectually disabled intellectual ability in adolescence has been shown to be an
populations. The prevalence of schizophrenia among people with independent risk factor for schizophrenia in prospective,
intellectual disability was higher than that of bipolar disorder population-based studies.27 Cognitive deficit involving several
(1.2% for the older cohort, 1.0% for the younger cohort) and domains (verbal memory and learning, spatial working memory,
unipolar major depression (0.9% for both birth cohorts) in the attention, speed of information processing, performance IQ and
same population. The percentage of individuals with intellectual motor skills), has been identified as a widely shared characteristic
disability who had bipolar disorder was within general population of schizophrenia in a comprehensive quantitative review.28 In a
estimates of 1.3 for Bipolar I and II,21 while the percentage with significant proportion of individuals, such deficits are present
unipolar depression was well below general population estimates prior to onset of psychotic symptoms29 and remain stable over
(for example, 15.4% in the NEMESIS study).18 The estimate for the course of illness, independent of clinical state.30 A similar,
a lifetime history of at least one episode of non-organic psychotic though attenuated, profile of deficit has been found in clinically
disorder among people who are intellectually disabled was one in unaffected first-degree relatives of people with schizophrenia
ten (11.1% of the older birth cohort and 10.4% of the younger and in unaffected co-twins from twin pairs discordant for schizo-
birth cohort). This is markedly higher than general population phrenia.31 Such deficits tend to be accompanied by other early
estimates: recent epidemiological data from Finland put the life- abnormalities affecting neuromotor function and language,32
time prevalence of DSM–IV psychotic disorders at 2.43%.20 A suggesting a neurodevelopmental origin, long pre-dating psychosis.
recent point prevalence estimate for intellectually disabled popula- A re-analysis of Penrose’s sample of families with mental illness
tions of 4.4%7 adds credence to our high figure. Of note, the total and intellectual disability33 found a significant excess of relatives
figure for psychosis is largely attributable to people diagnosed with diagnosis of schizophrenia among the probands with
with schizophrenia. intellectual impairment. Together with findings that a specific
Compared with individuals with intellectual disability alone, genetic condition, 22q11 deletion syndrome, is associated with
those with dual diagnosis were more likely to have a diagnosis higher risks for both schizophrenia and learning disability,34 the
of pervasive developmental disorder, and far less likely to have evidence points to a likely common pathogenetic pathway for dual
Down syndrome. The latter finding was unexpected. Although diagnosis. This is further supported by a comprehensive clinical
the link between Down syndrome and Alzheimer’s disease is well and cognitive investigation of a sample of individuals with mild
established, there is some evidence that psychosis may be rare in intellectual disability and schizophrenia.26 Recent research led by
people with Down syndrome.22,23 Recent data suggest that the the senior co-author (A.J.) identified a distinct genetic basis for
effect of ‘unknown protective factors’ associated with Down a subtype of schizophrenia characterised by pervasive cognitive
syndrome may extend to mental illness in general.24 Given how deficit, comprising up to 50% of families with one or more
few studies have investigated this relationship directly, the affected members.35 The balance of evidence, therefore, favours
question remains open as to whether the observed difference in a common aetiology for intellectual impairment and psychosis
prevalence is real or due to diagnostic under-ascertainment. in a significant proportion of schizophrenia cases.

369
Morgan et al

Illness severity and service use by people

with co-occurring disorders

Psychiatric
In-patient days, rate per 1000 days since first admission

only
In keeping with the literature, we found that people with a dual

30
17

13
6

2
1965–79 birth cohort
diagnosis had a more severe psychiatric illness than those with a
psychiatric diagnosis alone36 including an earlier age at first
contact with psychiatric services, more in-patient admissions
and more in-patient days. These differences were particularly

diagnosis
Dual pronounced in those with schizophrenia co-occurring with

45
21
22
23
6
intellectual disability. Indications that this is not an artefact arising
from long periods of institutional care due to co-occurring
intellectual disability include a higher median number of
Psychiatric

admissions in addition to a higher median number of in-patient

1950–64 birth cohort

only

days in the dual-diagnosis group. An alternative hypothesis, that

17
13

10
6

2
the difference in severity is because only individuals with a dual
diagnosis with the most severe psychiatric illness are able to access
generic mental health services, could not be tested here.
diagnosis
Dual

34
31

22
5

Limitations
Although linkage of two registers resulted in an enriched source of
In-patient admissions, rate per 5 years since first admission

Psychiatric

data for analysis, there are several limitations related to the use of
only
1965–79 birth cohort

2.9
2.4
1.7
2.4
1.1

these administrative resources. First, it is likely that people with a

Service utilisation by persons with a dual diagnosis compared with those with psychiatric illness only (by birth cohort)

dual diagnosis are still underestimated in these data. Several

factors contribute to this underestimation. For one, the separation
of mental health from intellectual disability services means that
people with an intellectual disability may not be adequately
diagnosis
Dual

assessed and treated for comorbid psychiatric illness; the converse

3.5
2.5
3.8
3.2
1.4

also applies. Moreover, difficulties in clinical assessment may

preclude the making of a psychiatric diagnosis in those with
intellectual disability by masking psychiatric symptoms, especially
Psychiatric

less florid symptoms such as those associated with depression.

1950–64 birth cohort

only

1.5
1.6
1.4
1.5
0.7

Furthermore, the exclusion from the psychiatric register of general

practice and private psychiatric contacts may lead to an under-
ascertainment of individuals with intellectual disability who have
diagnosis

co-occurring milder forms of mental illness. None the less, the

Dual

1.6
2.3
1.6
1.9
0.9

inclusion of out-patient data makes the Western Australian

psychiatric register one of the most comprehensive worldwide,
and the psychoses, where lifetime contact with in- and out-patient
services is high, will be particularly well represented. See, for
Psychiatric

example, prevalence estimates in the Australian National Survey

only

85.7
74.9
58.1
75.3
55.7
1965–79 birth cohort

of Low Prevalence (Psychotic) Disorders.37 Accordingly, this study

focused primarily on the psychoses. Second, although the psychi-
atric register uses ICD criteria to record level of intellectual dis-
Any in-patient admissions, %

ability, no clear classification guidelines are in place for the

diagnosis

recording of psychiatric comorbidity on the Intellectual Disability

Dual

92.8
90.6
62.1
89.3
55.0

Register. Consequently, cases recorded as dual diagnosis on the

Intellectual Disability Register were used only in the estimation
of overall psychiatric comorbidity but could not be allocated to
specific diagnostic categories. At most, these limitations may have
Psychiatric
1950–64 birth cohort

led to an underestimate of the prevalence of dual diagnosis, with-

only

90.0
76.8
67.7
80.3
61.9

out affecting the general pattern of findings and conclusions. The

relative stability of many findings across the birth cohorts suggests
that they are not artefacts of changing diagnostic trends and
diagnosis

paradigms.
Dual

92.2
97.4
90.0
92.7
65.3

The need for an integrated approach

Both intellectual disability and severe psychiatric illness result in
Any psychiatric illness

serious and lifelong impairments. Where the two co-occur, the

Unipolar depression
Psychosis (lifetime)

impact of burden of disease on affected individuals, their carers,

Bipolar disorder
Schizophrenia

their family and friends, and the services that provide for them
is particularly high. This study highlights the extent to which dual
Table 5

diagnosis is underestimated as a result of the administrative divide

that has existed historically between services for people who are
intellectually disabled and those for people with psychiatric illness.

370
 Intellectual disability and schizophrenia

This is now increasingly acknowledged as having a profound effect 13 Yeargin-Allsopp M, Murphy C, Cordero J, Decouflé P, Hollowell J. Reported
biomedical causes and associated medical conditions for mental retardation
on the capacity to care for individuals with dual diagnosis.38 In among 10-year-old children, metropolitan Atlanta, 1985 to 1987. Dev Med
Western Australia, this division creates structural impediments Child Neurol 1997; 39: 142–9.
to inter-agency approaches to integrated clinical practice: there 14 Jablensky A, Morgan V, Zubrick S, Bower C, Yellachich L. Pregnancy, delivery,
is no specific service provision for people with a dual diagnosis, and neonatal complications in a population cohort of women with
and mainstream psychiatric services are provided only upon schizophrenia and major affective disorders. Am J Psychiatry 2005; 162:
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referral. Of concern, correct identification of dual diagnosis is
15 World Health Organization. Mental Disorders. Glossary and Guide to their
poor, measurement tools are still in nascence,39 and little research Classification in accordance with the Ninth Revision of the International
informs the treatment evidence base.40–41 This has impeded the Classification of Diseases. WHO, 1978.
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programmes. In the absence of an integrated approach, people 18 Bijl RV, Ravelli A, van Zessen G. Prevalence of psychiatric disorder in the
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Incidence Study (NEMESIS). Soc Psychiatry Psychiatr Epidemiol 1998; 33:
disabled, yet out of reach of best evidence-based practice. 587–95.
19 Einfeld S, Piccinin A, Mackinnon A, Hofer S, Taffe J, Gray KM, Bontemp DE,
Vera A. Morgan, MSocSc, Neuropsychiatric Epidemiology Research Unit, School of Hoffman LR, Parmenter T, Tonge BJ. Psychopathology in young people with
Psychiatry and Clinical Neurosciences, The University of Western Australia; Helen intellectual disability. JAMA 2006; 296: 1981–9.
Leonard, MBChB, Jenny Bourke, MPH, Telethon Institute for Child Health Research,
Centre for Child Health Research, The University of Western Australia; Assen 20 Perälä J, Suvisaari J, Saarni S, Kuoppasalmi K, Isometsä E, Pirkola S, Partonen
Jablensky, DMSc, Neuropsychiatric Epidemiology Research Unit and Centre for T, Tuulio-Henriksson A, Hintikka J, Kieseppa T, Härkänen T, Koskinen S,
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The University of Western Australia, Perth, Australia General Population. Arch Gen Psychiatry 2007; 64: 19–28.

Correspondence: Vera A. Morgan, The University of Western Australia School 21 Judd LL, Akiskal HS. The prevalence and disability of bipolar spectrum
of Psychiatry and Clinical Neurosciences, Level 3 Medical Research Foundation disorders in the US population: re-analysis of the ECA database taking into
Building, Rear 50 Murray Street, Perth, Western Australia, Australia 6000. account subthreshold cases. J Affect Disord 2003; 73: 123–31.
Email: [email protected]
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Wanting to die
Poem
Anne Sexton

Since you ask, most days I cannot remember.

I walk in my clothing, unmarked by that voyage.
Then the almost unnameable lust returns.

Even then I have nothing against life.

I know well the grass blades you mention,
the furniture you have placed under the sun.

But suicides have a special language.

Like carpenters they want to know which tools.
They never ask why build.

Twice I have so simply declared myself,

have possessed the enemy, eaten the enemy,
have taken on his craft, his magic.

In this way, heavy and thoughtful,

warmer than oil or water,
I have rested, drooling at the mouth-hole.

I did not think of my body at needle point.

Even the cornea and the leftover urine were gone.
Suicides have already betrayed the body.

Still-born, they don’t always die,

but dazzled, they can’t forget a drug so sweet
that even children would look on and smile.

To thrust all that life under your tongue!—

that, all by itself, becomes a passion.
Death’s a sad bone; bruised, you’d say,

and yet she waits for me, year after year,

to so delicately undo an old wound,
to empty my breath from its bad prison.

Balanced there, suicides sometimes meet,

raging at the fruit a pumped-up moon,
leaving the bread they mistook for a kiss,

leaving the page of the book carelessly open,

something unsaid, the phone off the hook
and the love whatever it was, an infection.

From The Complete Poems of Anne Sexton (Houghton Mifflin, 1981). >1981 Linda Gray Sexton and Loring Conant, Jr. Reprinted with the
permission of Sterling Lord Literistic, Inc.

Anne Sexton (1928–1974) was an American poet of the Confessional school. Throughout her life she had severe depression and was
hospitalised on several occasions. She began writing poetry while recovering after a suicide attempt in 1956, as suggested by her therapist,
Dr Martin Orne, and almost instantly won great acclaim – her first book, To Bedlam and Part Way Back (1960), was critically praised and
nominated for a National Book Award. Sexton’s poetry explored childhood guilt, mental illness, motherhood and female sexuality in a candid
and unflinching way (she thought that poetry ‘should almost hurt’), and is characterised by musical rhythms and striking imagery. She died by
asphyxiating herself.

Researched by Kasia Krawczyk.

The British Journal of Psychiatry (2008)
193, 372. doi: 10.1192/bjp.193.5.372

372