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The British Journal of Psychiatry

16. doi: 10.1192/bjp.bp.115.174649

Epidemiology of autism in adults across age


groups and ability levels*
Traolach S. Brugha, Nicola Spiers, John Bankart, Sally-Ann Cooper, Sally McManus,
Fiona J. Scott, Jane Smith and Freya Tyrer
Background
The epidemiology of autism in adults has relied on untested
projections using childhood research.
Aims
To derive representative estimates of the prevalence of
autism and key associations in adults of all ages and ability
levels.
Method
Comparable clinical diagnostic assessments of 7274 Adult
Psychiatric Morbidity Survey participants combined with a
population case-register survey of 290 adults with intellectual
disability.
Results
The combined prevalence of autism in adults of all ages in
England was 11/1000 (95% CI 319/1000). It was higher in

Globally, in 2010, there were an estimated 52 million people with


autism that accounted for more than 111 disability adjusted
life years (DALYs) per 100 000 population.1 Until recently,
information on the epidemiology of autism was based on
childhood studies.2,3 A complete understanding of the nature,
causes and public health impact of autism should consider the
interplay of genetic, epigenetic and environmental associations
throughout the life course.4 There is a widespread but largely
uninformed assumption5,6 that as many as a half of all adults with
autism have intellectual disability, which, if untrue, could distort
planning a balanced range of services for the whole population
with autism. As childhood diagnoses of autism (or of Asperger
syndrome) have increased,7,8 parental fears remain undiminished
concerning the future care of their offspring with little prospect of
funded services when they can no longer provide support.
Two UK studies limited to adults with intellectual disability9,10
suggest autism rates between 70/1000 and 210/1000 but lacked
a validated systematic diagnostic assessment. Recently the
prevalence of autism was reported as 9.8/1000 in the Adult
Psychiatric Morbidity Survey (APMS), a nationally representative
sample of adults capable of giving informed consent and of taking
part in a survey interview, living in private households.11 That
study11 found autism was associated with reduced verbal IQ,
low educational achievement, male gender and epilepsy.12
However, by excluding people without the decision-making

*Findings from this project were presented to: the Annual Meeting of the
Royal College of Psychiatrists, Birmingham, July 2015; IMFAR Conference,
at Donostia, San Sebastian, Spain, 2013. Summary findings and methods of
the IDCR study have appeared in the HSCIC Government Report: Brugha T,
Cooper SA, McManus S, Purdon S, Scott FJ, Spiers NA, et al. Estimating the
Prevalence of Autism Spectrum Conditions in Adults: Extending the 2007
Adult Psychiatric Morbidity Survey. Leeds: The NHS Information Centre, 2012,
which is cited in this article. Tables in the present article do not duplicate
tables in that report.

those with moderate to profound intellectual disability (odds


ratio (OR) = 63.5, 95% CI 27.4147.2). Male gender was a
strong predictor of autism only in those with no or mild
intellectual disability (adjusted OR = 8.5, 95% CI 2.034.9;
interaction with gender, P = 0.03).
Conclusions
Few adults with autism have intellectual disability; however,
autism is more prevalent in this population. Autism measures
may miss more women with autism.
Declaration of interest
None.
Copyright and usage
B The Royal College of Psychiatrists 2016.

capacity to consent or to take part in a standard survey interview,


or who were living in care settings such as institutions or care
homes for people with intellectual disabilities, adults with
moderate to profound intellectual disability were unrepresented.
Given the strong association between intellectual disability and a
childhood13 and adulthood9 diagnosis of autism, knowledge of
the overall prevalence and age11 and gender2,3 profile of autism
in adults requires adults of all ability levels to be examined using
comparable methods. This paper reports on the epidemiology of
autism drawing on samples combined to reflect the full range of
ability levels in the adult general population. The sample from
the first general population study11 was extended with the
inclusion of representative samples of adults with intellectual
disability omitted from the earlier survey. The aims were to
provide an estimate of the overall prevalence of autism and to
examine key associations in adults at all intellectual ability levels.

Method
Data from a multiphase survey of adults in private households
throughout England (APMS;11 fieldwork 2007) and a single-phase
survey of a representative group of adults with intellectual disability
drawn from intellectual disability case registers in three areas of
England (the Intellectual Disability Case Register study (IDCR);14
fieldwork 2010) were combined. The APMS employed a stratified
two-phase design based on a random probability sample of one
adult per private household,15 throughout England (as already
described11) followed by diagnostic assessments of respondents
at an increased risk of autism.16
For the IDCR, adults not considered in the APMS, by design,
and living in communal care establishments and private households, were randomly sampled from three adult intellectual
disability registers in England, in Leicestershire, Lambeth and
Sheffield, stratified by age, gender and type of residence (detailed

Brugha et al

in online supplement DS1). For the adults living in private


households, those judged sufficiently able to have taken part in
the APMS were then excluded. All adults living in communal care
establishments were included, as these establishments were
excluded from the APMS, yet a lot of people with intellectual
disabilities live in such establishments. The sample size in APMS
phase two was chosen to reflect the sample sizes and precision
of psychosis prevalence estimates required to monitor trends in
each APMS survey since the first APMS in 1993.17 The IDCR
sample was designed to achieve similar precision.
APMS participants gave informed consent directly to APMS
phase-one interviewers. In the IDCR, following the English Mental
Capacity Act 2005, consent was taken wherever possible with
input from consultees as appropriate. In keeping with the requirements of the ethics committees, participants in Leicestershire were
telephoned by the research team (opt-out consent procedure);
those in Lambeth and Sheffield contacted the research team only
if they wished to take part in the study (opt-in consent
procedure). Ethical approval for the APMS was obtained from
the Royal Free Medical School Research Ethics Committee,
London, UK. Ethical approval for the IDCR was obtained in
Leicestershire from the Derbyshire Ethics Committee and for
Sheffield and Lambeth from the Essex 2 Research Ethics
Committee, UK.
The 20-item self-completion Autism-spectrum Quotient
(AQ)15,18 was used in phase one of the APMS to select participants
for a second-phase evaluation using detailed clinical assessments
based on Module 4 of the Autism Diagnostic Observation
Schedule (ADOS-Mod4).16 In the IDCR study, most participants
were assessed at first interview with Module 1 of ADOS
(ADOS-Mod1),19 which is designed for individuals who do not
consistently use phrase speech. The ADOS-Mod4 was used for
verbally fluent adults living in communal care establishments.
Threshold scores of 12+ on the ADOS-Mod1 and 10+ on
the ADOS-Mod4 were used to define an individual as having
autism. Both the ADOS-Mod1 and ADOS-Mod4 were subject
to validation and calibration work (online supplement DS2)
within the study general population samples11,14 based on
developmental assessments using the Autism Diagnostic Interview
Revised (ADI-R)20 and the Diagnostic Interview for Social and
Communication Disorders (DISCO)21 and, in the APMS, a
consensus clinical diagnosis evaluation (n = 200).22 In the IDCR
a random sample of 30 carers of individuals who scored high
on the ADOS-Mod1 (57) and a random sample of 30 carers
of individuals who scored low on the ADOS-Mod1 (57) were
invited to take part in an interview by a senior research
psychologist (J.S.) using the DISCO and ADI-R, to test the
accuracy of the ADOS-Mod1 in identifying individuals with
autism. Both studies confirmed the diagnostic thresholds for
autism originally recommended by the developers of the ADOS.19
Diagnostic interviewers were experienced in psychological
research, and received an induction and training programme,
run by a senior research psychologist (J.S.), a psychiatrist
(T.S.B.) and a qualified ADOS trainer (F.J.S.). Training experience
was gained through assessing adults living in settings in which
fieldwork subsequently took place. Field interviews did not
commence until the interviewers achieved at least 90% agreement
on ratings of jointly observed ADOS examinations. During
fieldwork, interviewers received supervision sessions and prepared
case vignette reports. They took part in post fieldwork debriefing
to add further contextual information.
Intellectual disability was defined as a significant intellectual
impairment with onset before adulthood and deficits in skills
needed for daily functioning2325 assessed in the IDCR by the
carer-report version of the Vineland II Adaptive Behaviour

Scales.26 In the APMS, predicted Verbal IQ (V-IQ; range estimate


70130) was derived using the National Adult Reading Test
(NART).27 The NART requires a high reading age, leaving gaps
in its completion for adults with literacy problems of a wide range
of causes, including mild intellectual disability, dementia, dyslexia,
lack of education. Given this limitation (online supplement
DS2), we were unable to identify those in the APMS with mild
intellectual disability, so they all were included in a category of
none to mild intellectual disability. This assumption is reasonable,
as ability to participate in the APMS would be extremely unlikely
at an ability level of moderate intellectual disabilities or lower. In
both surveys questionnaires were completed covering participants
physical and mental health, socioeconomic factors and use of
services, using comparable measures.15
Statistical analysis
Online supplement DS1 describes how the APMS and IDCR
samples were combined for analysis, which is illustrated in online
Fig. DS1. The svytabulate procedure (Stata 12.0 for Windows) was
used to estimate prevalence of autism by intellectual disability, age
and gender; svylogistic was used to fit logistic regression models
for autism by age and gender, taking the complex survey design
into account and adjusting for the presence of epilepsy; confidence
intervals were calculated using Taylor linearisation.28 To examine
whether predictors of autism are the same in those with and
without moderate intellectual disability, models were fitted for
univariable predictors with an interaction term, allowing odds
ratios to vary by disability level. The significance of interaction
terms was tested using an adjusted Wald test29 and where
significant (P50.05) was included in the final multivariable
model.
Results
Achieved sample and response rate
Of 13 171 households identified as potentially eligible in the
APMS, 7461 (57%) provided a complete phase-one interview of
whom 849 were selected for phase-two interviews. Of these 630
(74%) completed phase-two assessments: 618 full ADOS-Mod4
assessments were carried out in the APMS. Analyses reported
previously11 found no evidence of non-response bias.
In the IDCR study, response rates were much higher in
Leicestershire under the opt-out ethical approval procedure than
for Lambeth or Sheffield. There were only five individuals assessed
from Sheffield. Response rates were also higher in communal care
establishments. Overall, 75/118 (64%) establishments took part
and, in these 207/300 (69%) eligible individuals approached took
part. In the IDCR private households, however, only 83/410 (20%)
individuals took part, of whom 78 were from Leicestershire. Very
few family carers of adults living in private households in Lambeth
or Sheffield responded to the written invitation so, under opt-in
procedures, almost all could not be contacted further. Nevertheless, the achieved communal care establishments sample in
Leicestershire compared well with the case-register population
(see online supplement DS3), although the participants in the
private household sample were more likely to be male and have
more severe intellectual disability.
Of 290 individuals interviewed, 276 were assessed for autism.
Assessments with the remaining 14 were attempted but could not
be completed because participants had profound and multiple
disabilities and assessors were unable to give a confident
assessment. Missing values in the APMS were minimal (51%
on all variables): there were 12 (4.3%) individuals in the IDCR
study who had no Vineland assessment but were assessed for

Epidemiology of autism in adults across ability levels

autism. Sensitivity analyses with these sequentially counted as


having and not having intellectual disability had no effect on
the findings. Other missing values in the IDCR study were
infrequent and are shown in the tables where they amount to
more than 5% of n.

Participants with moderate to profound intellectual disability were


more likely to be male, younger, and were more ethnically diverse
than those with no or mild intellectual disability (see Table 1 and
online Table DS4 for a version of Table 1 covering a larger number
of characteristics). The increased prevalence of South Asian
ethnicity reflects the location of most of the IDCR sample in
Leicestershire (online Table DS4). Those in the sample with
moderate to profound intellectual disability were more likely to
be disabled and less likely to have ever worked.
Autism prevalence by age, gender and intellectual
ability
There were 14 men and 4 women with autism in the APMS
subsample, and 49 men and 40 women with autism in the IDCR
subsample. The prevalence of autism in England, estimated from
the combined reweighted sample, was 1.1% (95% CI 0.31.9%).
Because people with moderate to profound intellectual disability
make up just 0.3% of the total population, overall associations
of autism with age and gender for the population as a whole are
unchanged by the inclusion of rates for people with intellectual
disability. There was a gradient of autism prevalence by
intellectual ability (Fig. 1), with prevalence considerably higher
in those with moderate to profound intellectual disability
Table 1

Women

60
Prevalence (%)

Participant characteristics by intellectual ability

Men

80

40

20

0
Profound intellectual
disability

Moderate/severe
disability

None to mild
disability

Fig. 1 Gradient of autism prevalence by intellectual ability;


combined sample.
Intellectual ability is classified using the Vineland II caregiver-rating form for the
Intellectual Disability Case Register (IDCR) sample; those in the Adult Psychiatric
Mobility Survey (APMS) sample are assumed to have no or mild intellectual disability.

(39.3%, 95% CI 31.048.4, compared with 1.0%, 95% CI 0.4


2.2 in those with no or mild intellectual disability (OR = 63.5,
95% CI 27.4147.2)).
In the population with moderate to profound intellectual disability, prevalence of autism was not specifically associated with
gender, being 42.3% (95% CI 31.154.3) in men and 35.2%
(95% CI 23.549.0 ) in women, P = 0.43 (Table 2). However, in

Sample characteristics a
No or mild/borderline intellectual disability

Characteristic

Moderate to profound intellectual disability


IDCR (n = 217)

IDCR no or mild/borderline
intellectual disability (n = 47)

APMS
(n = 7274)

Gender, n (%)
Male
Female

121 (55.8)
96 (44.2)

19 (40.4)
28 (59.6)

3130 (43.0)
4144 (57.0)

13
18
10
6

921
1966
2409
1978

Age group, n (%)


1829
3044
4564
65+
Intellectual ability, n (%)b
Profound intellectual disability
Severe intellectual disability
Moderate intellectual disability
Mild/borderline intellectual disability
IQ 7085
IQ 86100
IQ 101+
IQ not assessed
Activities of daily living (ADL)
ADL difficulties, median (IQR)c
ADL with a lot of difficulty, median (IQR)
Participants with missing data on ADL, n (%)
Work, n (%)
Never in paid work
Ever in paid work
Missing

38
62
97
20

(17.5)
(28.6)
(44.7)
(9.2)

(27.7)
(38.3)
(21.3)
(12.8)

(12.7)
(27.0)
(33.1)
(27.2)

125 (57.6)
58 (26.7)
34 (15.7)

47 (100)

1006 (13.8)
1829 (25.1)
3916 (53.8)
523 (7.2)

7 (7, 7)
6 (4, 7)
13 (6.0)

5 (4, 7)
2 (0, 3)
8 (17.0)

0 (0, 1)
0 (0, 0)
18 (0.2)

185 (85.3)
10 (4.6)
22 (10.1)

30 (63.8)
11 (23.4)
6 (12.8)

230 (3.2)
6975 (95.9)
69 (0.9)

IDCR, Intellectual Disability Case Register; APMS, Adult Psychiatric Mobility Survey; IQR, interquartile range.
a. See online Table DS4 for a more detailed version of this table covering a larger number of variables.
b. Classified using the Vineland II caregiver-rating form26 for the Intellectual Disability Case Register (IDCR) sample and the National Adult Reading
Test (NART) for Adult Psychiatric Morbidity Survey (APMS) sample. Twelve adults from the IDCR study were excluded because they could not be classified.
c. Difficulty with seven ADL including personal care, getting out and about and using transport, medical care, household activities, practical activities, paperwork and managing money.

Brugha et al

validated in the study samples with the aim of achieving comparable


measurement across intellectual ability levels. However, there is
potential for selection bias on the estimate of autism prevalence
in the IDCR study as a result of the low response in the IDCR
private household sample. Detailed investigation of the pattern
of non-response by age, gender, residence and presence of autistic
traits in Leicestershire (online supplement DS3), makes type II
error unlikely (i.e. failure to find a relationship between gender
and prevalence of intellectual disability where it really exists).
We used moderate intellectual disability assessed by the
Vineland II caregiver-rating form in the IDCR as a threshold for
intellectual disability in the logistic regression, with none or mild
intellectual disability imputed for the APMS sample. This measure
is consistent with other recent prevalence studies of adults,35,36
giving a standardised but more exclusive measure of intellectual
disability. Our results were substantially unchanged when we
reanalysed with intellectual disability defined pragmatically as lack
of decision-making capacity to consent and to participate in a
household survey. This is closer to a threshold of mild intellectual
disability, but with unavoidable undercounting of those with mild
disability in the APMS.
Analysis was limited by the small number of individuals with
autism, particularly in the APMS sample. The presented analyses
are weighted to represent the national population by age, gender,
intellectual disability and type of residence. Calculation of the
IDCR weights was subject to error as it relied upon incomplete
official statistics, and on the assumption that the three case-register
areas represent the English population as a whole. Detailed
sensitivity analyses found that the effects of estimating unknown
population quantities on the overall prevalence estimates was
minimal, giving prevalence of between 1.1 and 1.2%, regardless
of assumptions made.37

the population with no or mild intellectual disability, prevalence


was considerably higher in men at 1.9% (95% CI 0.84.2) than
in women 0.2% (95% CI 0.00.7). The interaction between
intellectual disability and gender on the prevalence of autism
was statistically significant (P = 0.02; Wald test) and remained
statistically significant when adjusted for age and presence of
epilepsy (Table 3). There was evidence of a small decline in the
prevalence of autism with age, statistically significant only in those
with moderate to profound intellectual disability (Table 2).
Discussion
This standardised whole population sample case-finding study has
yielded new understanding of the prevalence of autism and its
associations in adults with intellectual disability, gender and age.
The usual male gender excess for autism in childhood2,3 was not
evident among adults with intellectual disability, showing a
significant gender6intellectual disability interaction on autism
prevalence, with men and women with at least moderate
intellectual disability having similar prevalence. Previous studies
of adults with intellectual disability have found a higher rate of
autism in men than women9,30,31 although not as high as for
the rest of the population.32 Childhood population estimates33
have reported a male:female ratio of 2.1 : 1 for children with
IQ570 and 3.7 : 1 for those without; an administrative study34
also found that the gender ratio diminished with increasing
disability level in children; the Global Burden of Disease (GBD)
project estimate,1 based on childhood, incidence and mortality
data, was three times commoner in males than females with
autistic disorders (autism with delay in language or cognitive
development) and over four times commoner for other forms of
autism.
Strengths and limitations

Interpretation of our findings

The strength of this study lies in the comprehensive epidemiological


sampling of adults of all ability levels in defined geographic areas
and the use of direct diagnostic assessments of autism carefully

There are various hypotheses that could account for the gender
pattern we found: women with autism could be more severely
impaired38 or there could be more missed cases of autism in

Table 2

Univariate predictors of autism by intellectual disability a


Moderate to profound intellectual disabilityb

Characteristic

No or mild/borderline intellectual disability


OR (95% CI)

P for variable6intellectual
disability interaction

OR (95% CI)

Gender
Women
Men

1.00
1.35 (0.642.83)

0.43

1.00
8.97 (2.2036.52)

0.002

0.02

Age (year)

0.96 (0.931.00)

0.008

0.98 (0.921.04)

0.51

0.61

a. Weighted to represent the English population by age, gender, intellectual disability and type of residence.
b. Classified using the Vineland II caregiver-rating form in the Intellectual Disability Case Register (IDCR); those in the Adult Psychiatric Mobility Survey (APMS) sample are assumed to
have no or mild intellectual disability.

Table 3

Multivariate predictors of autism by intellectual disability, with gender6intellectual disability interaction a


OR (95% CI)
All

Moderate to profound
intellectual disabilityb

Gender
Women
Men

1.00
1.31 (0.582.99)

Age (year)

0.98 (0.921.05)

Characteristic

No or mild/borderline
intellectual disability

1.00
8.46 (2.0534.80)c

P-value for variable6intellectual


disability interaction

0.03

a. Reweighted to represent the English population by age, gender, intellectual disability and type of residence and adjusted for carer or self-reported epilepsy or fits since age 16.
b. Classified using the Vineland II caregiver-rating form in the Intellectual Disability Case Register (IDCR); those in the Adult Psychiatric Mobility Survey (APMS) sample are assumed
to have no or mild intellectual disability.
c. P50.01.

Epidemiology of autism in adults across ability levels

women without intellectual disability. Missed cases could result from


male bias in autism diagnostic markers;39 female presentation of
autism may differ from male presentation and measures may be
less able to detect the female presentation.39,40 Autism in women
of average or above average intelligence may be masked by other
conditions, such as eating disorders,41 anxiety disorders42 and
borderline personality disorders.43 Such women may be better
than women with intellectual disability at hiding their difficulties
by imitating social interactions,44 having better language skills,
different special interests, less hyperactivity and aggression.45 If
more able women with autism are not diagnosed or are incorrectly
diagnosed, then the prevalence of autism could be underestimated
and their needs unmet. Biological theories for the male excess
of autism46 may also benefit from reconsideration. Gender
determination and autism could have a common cause, i.e.
intrauterine levels of testosterone. Differences in gender ratio
could reflect different causes for autism. One small study (n = 94
individuals with autism)47 reported a male:female gender ratio that
was closer to 2 : 1 in individuals with genetic, magnetic resonance
imaging or clinical morphological abnormalities and found gender
ratios closer to 8 : 1 in individuals without these abnormalities.
Although almost two in five adults with moderate to profound
intellectual disability had autism, higher than expected based
on previous research,9,32,48 only 1% of adults with no or mild
intellectual disability had autism. But because moderate to
profound intellectual disability affects only 0.3% of all adults9
the point estimate for the prevalence of autism in the population
as a whole only changed from 1.0 to 1.1% when adults with
intellectual disability were included in the overall prevalence
estimate. This finding runs counter to a widespread assumption
that as many as half of adults who have autism have intellectual
disability.6
Only a small decline in the prevalence of autism with
increasing age in adults with moderate to profound intellectual
disability emerged, the same in magnitude to that reported
previously in the household population,11 but the finding was
only statistically significant in the intellectually disabled
population and not in the combined or household population
samples. The GBD1 showed no clear evidence of a change in
prevalence of autism between 1990 and 2010 but as there was
no information on prevalence in adulthood, age pattern findings
were informed entirely by remission and mortality data. Although
our finding does not support the suggestion that rates of autism
are increasing rapidly (although diagnosis may be),7,8 further
independent work on this association using case-finding population
research methods is needed.
It was noted that research-identified individuals with autism
reported previously in the able household population11 had not
been recognised or diagnosed by health services. New findings
reported here suggest that the research case-finding measures used
may also fail to identify women with autism who do not have
intellectual disabilities, possibly adding further to the invisibility
of autism in society. The picture that emerges is of a large
population of adults who are significantly disabled whose needs
remain unmet because they are not recognised, particularly when
they do not have intellectual disabilities. The clinical, health and
economic implications are potentially enormous and urgently
merit the attention of further research.
We acknowledge that for some there may be a difficulty in
placing the present prevalence work in a familiar autism diagnostic
context. The instruments used in our survey, including the ADOS,
in many ways are reflective of, but are not directly derived from
either of the classification systems current when we developed the
study. These were the ICD-1049 and the DSM-IV-TR50 diagnostic
criteria for pervasive developmental disorder (including childhood

autism and Asperger disorder) both primarily developed for use


in childhood. We believe that the strength of our approach to
assessing autism in adulthood is that it is achieved in such a
way as to make future replication and reliable comparison by
independent researchers possible in other countries and
populations. All such research requires a trade-off between
reproducibility and clinical familiarity and usage. We believe that
for a first-ever epidemiological study in adults we have taken the
most appropriate line using the most relevant instruments, with
clearly established reliability, supported by validation studies.51
In future work additional clinical information will be collected
with the intention of making it possible to describe findings in
relation to more recent developments in the classification of
autism such as the DSM-552 and ICD-11 autism spectrum
disorder criteria currently being finalised and possibly also to
future such developments in classification.
Traolach S. Brugha, MD(NUI) FRCPsych, Nicola Spiers, MSc PhD, Department
of Health Sciences, University of Leicester, Leicester; John Bankart, MSc PhD,
Department of Primary Care and Health Sciences, University of Keele, Stoke-on-Trent;
Sally-Ann Cooper, MD FRCPsych, Institute of Health and Wellbeing, University of
Glasgow, Gartnavel Royal Hospital, Glasgow; Sally McManus, MSc, NatCen Social
Research, London; Fiona J. Scott, PhD Cpsychol, Jane Smith, MSc, Freya Tyrer,
MSc, Department of Health Sciences, University of Leciester, Leciester, UK
Correspondence: Traolach S. Brugha, Department of Health Sciences,
University of Leicester, Leicester General Hospital, Gwendolen Road, Leicester
LE5 4PW, UK. Email: tsb@le.ac.uk
First received 31 Aug 2015, final revision 13 Dec 2015, accepted 21 Jan 2016

Funding
The study was funded by the Department of Health, London, through the Health and Social
Care Information Centre, Leeds, UK. The funder played a substantial role in determining the
content of the surveys, but played no part in the design, analysis or interpretation of this
study, in drafting this article or in the decision to submit it for publication.

Acknowledgements
Our recently deceased colleague Professor Howard Meltzer played a key role in the design
and development of this study; we would like to express our appreciation for his insight,
knowledge and contribution. We acknowledge all the carers and adults with intellectual
disability who participated in this study. We are grateful to Susan Purdon for advice and
comments on study design and analysis and to Abdolreza Ashtarikiani, Sabyasachi Bhaumik,
Gyles Glover, Richard Mills and Patricia Howlin for advice. Anonymised data arising from this
survey have been archived following standard procedures by the UK Data Service (http://
discover.ukdataservice.ac.uk/Catalogue/?sn = 7082&type = Data%20catalogue). As the survey
involved a case register, particular care was taken to ensure that the data were anonymised,
including using a new numeric identifier, removing place of recruitment and presenting broad
age groups. Cross-tabulations of all variables archived were conducted to ensure that no
fewer than six individuals fell into each cell.

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Data supplement to Brugha et al. Epidemiology of autism in adults across age


groups and ability levels. Br J Psychiatry doi: 10.1192/bjp.bp.115.174649

Online supplement DS1: Sampling details of the Intellectual Disability Case Register
study (IDCR)
In order to achieve a complete sample of adults in England two groups of adults not
considered in the Adult Psychiatric Morbidity Survey (APMS) by design needed to be
identified: those living in a private household but incapable of taking part in a survey
interview because of intellectual disability, and those not included in the APMS sample due
to being resident in a communal care establishment (or institution). The IDCR was based
on samples drawn from three registers of adults with intellectual disability in England,
located in Leicestershire, Lambeth and Sheffield, although the achieved sample in Sheffield
was very small. The adult prevalence of intellectual disability, defined by significant
intellectual impairment (WHO definition) with adaptive skill deficits, using the registers at the
three sites was within the expected range (4.9, 4.3 and 5.4/ 1000 of the population of
Leicestershire, Lambeth and Sheffield respectively (National Statistics (1)). These registers
have been used extensively for research (2) (3) (4).
A random sample of individuals on the registers from private households with addresses
eligible for the APMS, was selected, stratified by age, sex and type of residence. Participants
were then excluded if they were judged to have decision-making capacity to consent and
sufficient ability to participate in the APMS. Interviewers initially made this judgement over
the telephone and again when visiting the potential participant in their own home (if they had
not already been excluded following the initial telephone conversation). The study also
included residents of communal care establishments, comprising any domestic group setting
with an intrinsic care function, such as a residential home or nursing home. For
Leicestershire and Sheffield, the IDCR study adopted a two stage sampling design for
communal care establishments. The first stage involved randomly selecting establishments
1

with four or more residents, with selection probabilities proportional to the number of eligible
residents. The second stage involved randomly selecting four participants from each of the
chosen communal care establishments stratified by sex and age. For Lambeth, which had
fewer communal care establishments, all establishments with 3 or more residents were
chosen and all residents were sampled.
Consent was obtained following the English mental capacity act, 2005, for adults who did not
have decision making capacity to consent to participate in the research. We excluded
participants who could not speak English and had non-English speaking carers. Sampled
participants, carers or managers were sent a letter of invitation, with information about the
study. Participants in Leicestershire were telephoned by the research team ('opt-out consent
procedure'); carers and participants in Lambeth contacted the research team only if they
wished to take part in the study ('opt-in consent procedure').

Combining the APMS and IDCR Samples for Analysis


In the IDCR study the primary sampling unit was the communal care establishment or, in the
case of those in private households, the individual. In the APMS the primary sampling units
were individual or small groups of postcode sectors. The datasets were appended, giving a
total of 268 strata, 260 by socioeconomic status within region from the APMS and 8 by age,
sex and residence (communal establishment or private household) from the IDCR study.
APMS data were weighted to account for the complex sampling design, including two-stage
sampling for autism as described elsewhere (5). The combined data (figure) were weighted
to represent the English population by age, sex, intellectual disability and type of residence.
Post-stratification weights were calculated using data from official statistics, including the
mid-year population estimates derived from the 2001 census and data on intellectual
disability from the Social Services Activity Statistics and the case registers. Full details are
given in a data quality and methodology report (6).
2

Figure: Illustrating the calculation of the combined autism prevalence estimate

Online supplement DS2 Possible limitations in the comparability of our assessment of


intellectual disability across the APMS and IDCR samples and in the assessment of
autism in the IDCR sample
Both ADOS-Mod1 and ADOS-Mod4 have been carefully validated in the study samples with
the aim of achieving comparable measurement across intellectual ability levels. There is
some concern that autism assessment in the intellectual disability study with the ADOSMod1 achieved only moderate sensitivity on validation. Assessors suggested that this may
be due to assessment tasks that are age-inappropriate for the adult population, for example
using bubbles, dolls and toy cars. It is possible that missed cases at older ages may
3

account for the decline in prevalence of autism with age found in the intellectual disability
study; alternatively, there may be an earlier age of death in the group with both autism and
intellectual disability (14;15). It is also possible that older people may do better in
assessments having adapted to their symptoms.
Online Supplement DS3: Examination of Potential for Selection Bias in the IDCR
The 276 adults who were assessed for autism had a similar age structure to the nonparticipants from the case registers, but with some oversampling of women (Table DS1).
Further information was recorded for 97% (n=3080) of those on the Leicestershire case
register only. This included a measure of autistic traits previously validated against clinical
diagnoses (16).
The traits were poor quality of social interaction, lack of empathy, simple stereotypies and
elaborate routine, usually carer-reported, but self-reported for a small minority who were
interviewed for the case register on their own.
In the Leicestershire sample, participants and non-participants in communal care
establishments had similar intellectual disability severity, ethnicity, epilepsy and autistic trait
profiles (Table DS1). Participants in private households were younger, had more severe
intellectual disability and greater autism, prevalence than non-participants. On restricting the
sample to adults with moderate to profound ID, the prevalence of epilepsy was marginally
higher among participants (30.6% and 24.3% for participants and non-participants
respectively) and the mean number of autistic traits was similar (0.72 and 0.74 for
participants and non-participants respectively).
Prevalence of two or more autistic traits in communal care establishments was 22.6% in
men and 21.4% in women, compared to 14.4% and 9.9% respectively in the private
household population. In the Leicestershire Communal Care Establishment sample, men
with two or more autistic traits were somewhat oversampled compared to those with no or
one trait, while the proportion of women with two or more traits was identical in participants
4

and non-participants (Table DS2). In the private household sample numbers were too small
to assess possible non-response bias. For the unexpected number of female autism cases
in the intellectual disability population to be artefactual, would require considerable undersampling of autistic men and oversampling of autistic women in the IDCR achieved sample.
There is no evidence of this in the comparison with the Leicestershire populations (Table
DS3), although assessment was limited by small numbers in the private household sample.
While there is some potential for selection bias on the estimate of autism prevalence in the
IDCR study private household sample, bias sufficient to undermine our finding of an
interaction between sex and intellectual disability on the prevalence of autism is implausible.
The IDCR sample is drawn largely from Leicestershire, a population that compares closely to
the English population on socio-demographic characteristics (Table DS2), with the exception
of greater numbers of South Asian ethnicity, mainly resident in the City of Leicester. The
proportion of school pupils with an official statement of special education needs, and the
proportion in special (education need) schools, is very similar to England as a whole,
suggesting that a honeypot effect is unlikely. There are approximately 0.5m people living in
the City of Leicester and surrounding built up area, 0.3m living in other urban areas (market
towns or other conurbations with population>10,000), and 0.2m living in rural areas.
Leicestershire lacks a major conurbation, which may be relevant given evidence from the
Leicestershire case register that autism is more prevalent in rural areas (7), but our sample
did include limited numbers from the London Borough of Lambeth.
In conclusion, the opt-in consent procedure in Lambeth and Sheffield, proved an almost
insuperable barrier to recruitment, meaning that the IDCR sample is largely based upon the
Leicestershire adult population case register. The Communal Establishment population in
Leicestershire was successfully surveyed, with 64% of establishments and 69% of eligible
individuals approached taking part. However, the response rate in private households in
Leicestershire was low at 35%. Difficulties in recruiting adults with intellectual disability into
research studies have been well documented (8-10). Many refusals were because carers
5

were worn out with a lifetime of caring. However, studies of autism in adults are very rare,
and the response rate is consistent with others (11;12). Only, the Glasgow cohort (13)
achieved a response rate of 70.6%, based on exceptional quality of routine data coding, and
collaborative working between the clinical team and research team in providing information
and consenting, but it did not have a validated systematic diagnostic assessment.

Additional References
(1) National Statistics. Mid-year population statistics. Durham: NOMIS; 2010.
http://webarchive.nationalarchives.gov.uk/20160105160709/http://ons.gov.uk/ons/rel/pop
-estimate/population-estimates-for-uk--england-and-wales--scotland-and-northernireland/mid-2010-population-estimates/index.html
(2) Roeleveld N, Zielhuis GA, Gabreels F. The prevalence of mental retardation: a critical review
of recent literature. Dev Med Child Neurol 1997 Feb;39(2):125-32.
(3) Institute of Public Care. Estimating the prevalence of severe learning disability in adults
(working paper). Oxford: Institute of Public Care via Projecting Adult Needs and Service
Information (PANSI); 2009.
(4) Parrott R, Emerson E, Hatton C, Wolstenholme J. Future demand for residential provision for
people with learning disabilities. Manchester: Hester Adrian Research Centre, University of
Manchester; 1997.
(5) Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, et al. Epidemiology of autism
spectrum disorders in adults in the community in England. Arch Gen Psychiatry 2011
May;68(5):459-65.
(6) Brugha T, Cooper SA, McManus S, Purdon S, Scott FJ, Spiers NA, et al. Estimating the
Prevalence of Autism Spectrum Conditions in Adults: Data quality and methodology
document. Leeds: The NHS Information Centre; 2012 Jan 31.
(7) Kiani R, Tyrer F, Hodgson A, Berkin N, Bhaumik S. Urban-rural differences in the nature and
prevalence of mental ill-health in adults with intellectual disabilities. J Intellect Disabil Res
2013 Feb;57(2):119-27.
(8) Evenhuis H, van SJ, Vink M, Weerdenburg C, van ZB, Stilma J. Obstacles in large-scale
epidemiological assessment of sensory impairments in a Dutch population with intellectual
disabilities. J Intellect Disabil Res 2004 Nov;48(Pt 8):708-18.
(9) Lacono T. Issues of informed consent in conducting medical research involving people with
intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 2003;16:41-51.
(10) Oliver PC, Piachaud J, Done J, Regan A, Cooray S, Tyrer P. Difficulties in conducting a
randomized controlled trial of health service interventions in intellectual disability:
implications for evidence-based practice. J Intellect Disabil Res 2002 May;46(Pt 4):340-5.

(11) Bhaumik S, Tyrer FC, McGrother C, Ganghadaran SK. Psychiatric service use and psychiatric
disorders in adults with intellectual disability. J Intellect Disabil Res 2008 Nov;52(11):986-95.
(12) McManus S, Meltzer H, Brugha T, Bebbington P, Jenkins R. Adult Psychiatric Morbidity in
England, 2007. Results of a household survey. London: The NHS Information Centre for
health and social care; 2009.
(13) Cooper SA, Smiley E, Morrison J, Williamson A, Allan L. Mental ill-health in adults with
intellectual disabilities: prevalence and associated factors. Br J Psychiatry 2007 Jan;190:2735.
(14) Gillberg C, Billstedt E, Sundh V, Gillberg IC. Mortality in autism: a prospective longitudinal
community-based study. J Autism Dev Disord 2010;40(3):352-7.
(15) Bilder D, Botts EL, Smith KR, Pimentel R, Farley M, Viskochil J, et al. Excess mortality and
causes of death in autism spectrum disorders: a follow up of the 1980s Utah/UCLA autism
epidemiologic study. J Autism Dev Disord 2013 May;43(5):1196-204.

(16) Bhaumik S, Tyrer F, Barrett M, Tin N, McGrother CW, Kiani R. The relationship between
carers' report of autistic traits and clinical diagnoses of autism spectrum disorders in adults
with intellectual disability. Res Dev Disabil 2010 May-Jun;31(3):705-12

Table DS1. Comparison of Case Register Characteristics between Participants


and Non-Participants, by residence and setting
Participants
Non-participants
with an autism
enrolled on case
assessment
registers when
sampled for IDCR
Communal care establishments
All
Age (when sampled)
Sex
Male
Leicestershire only
a
Autistic traits
2 traits
1 trait
Autistic traits missing
Ethnic group
White
South Asian
Other / Not known
b
Intellectual Disability Severity
Profound
Severe
Moderate
Mild/borderline
Not known
Epilepsy
Present
Absent
Not known
Private households
All
Age (when sampled)
Sex
Male
Leicestershire only
a
Autistic traits
2 traits
1 trait
Missing
Ethnic group
White
South Asian
Other / Not known
b
Intellectual Disability Severity
Profound
Severe
Moderate
Mild/borderline
Not known
c
Epilepsy
Present
Absent
Not known

(N=197)
47.413.7
103

(52.3)

(N=163)

(N=1697)
49.514.9
960

(56.6)

(N=886)

40
121
2

(24.5)
(74.2)
(1.2)

188
683
15

(21.2)
(77.1)
(1.7)

147
14
2

(90.2)
(8.6)
(1.2)

794
47
45

(89.6)
(5.3)
(5.1)

42
61
20
31
9

(25.8)
(37.4)
(12.3)
(19.0)
(5.5)

269
276
132
128
81

(30.4)
(31.2)
(14.9)
(14.4)
(9.1)

41
110
12

(25.2)
(67.5)
(7.4)

224
574
88

(25.3)
(64.8)
(9.9)

(N=79)
36.014.1

(N=4444)
38.014.5

41

2551

(51.9)

(N=74)

(57.4)

(N=2020)

8
63
3

(10.8)
(85.1)
(4.1)

246
1731
43

(12.2)
(85.7)
(2.1)

53
15
6

(71.6)
(20.3)
(8.1)

1490
385
145

(73.8)
(19.1)
(7.2)

22
29
11
6
6

(28.7)
(39.2)
(14.9)
(8.1)
(8.1)

337
532
473
466
212

(16.7)
(26.3)
(23.4)
(23.1)
(10.5)

23
47
4

(31.1)
(63.5)
(5.4)

393
1372
255

(19.5)
(67.9)
(12.6)

Plus-minus values are meansSD


a. Poor quality of social interaction, limited empathy, presence of elaborate routines
and presence of stereotypies (Bhaumik 2010; Holmes et al. 1982)
b. As measured using the Leicestershire ID Scale (Tyrer et al. 2008)
c. Self- or carer-reported epilepsy or fits since age 16.

Table DS2. Comparison of Leicestershire Case Register Characteristics between


Participants and Non-Participants by Sex.
Participants
Non-participants
with an autism
enrolled on case
assessment
registers when
sampled for IDCR
Communal care establishments
Males
Autistic traits
2 traits
1 trait
Missing
Intellectual Disability Severity*
Profound
Severe
Moderate
Mild/borderline
Not known
Epilepsy
Present
Absent
Not known
Females
Autistic traits
2 traits
1 trait
Missing
Intellectual Disability Severity*
Profound
Severe
Moderate
Mild/borderline
Not known
Epilepsy
Present
Absent
Not known
Private Households
Males
Autistic traits
2 traits
1 trait
Missing
Females
Autistic traits
2 traits
1 trait
Missing

(N=92)
25
65
2

(27.2)
(70.7)
(2.2)

(N=71)
15
56
0

(21.1)
(78.9)
0

(N=38)

(N=530)
113
409
8

(21.3)
(77.2)
(1.5)

(N=356)
75
274
7

(21.1)
(77.0)
(2.0)

(N=1122)

3 7.9
33 86.8
2 5.3
(N=36)

160 14.3
936 83.4
26 2.3
(N=898)

5
30
1

86
795
17

13.9
83.3
2.8

9.6
88.5
1.2

* As measured using the Leicestershire ID Scale (Tyrer et al. 2008)


Poor quality of social interaction, limited empathy, presence of elaborate routines and
presence of stereotypies (Bhaumik 2010; Holmes et al. 1982)

10

Table DS3. Leicestershire and England: Sociodemographic Characteristics and


Special Educational Needs (2011 Census).
Characteristic
Leicestershire
England
(%,N=1017697)
(%,N=53,012,456)
Usual resident population
Age yr
19.0
18.9
0 to 15
39.7
39.4
16 to 44
25.5
25.4
45 to 64
15.8
16.3
65 and over
Sex
Male
49.4
49.2
Ethnic group
White
78.4
85.4
South Asian
16.1
7.8
Black/African/Caribbean/Black
2.4
3.5
British
Other/mixed
3.1
3.3
Geography
Urban (built-up area >10,000
77.9
82.4
inhabitants)
(%,N=824,351)
(%,N=42,989,620)
Usual resident population aged 16
years and over
Highest Educational Qualification
None
24
22.5
GCSE or equivalent *,
27.9
28.5
42.2
43.4
Post-school
6
5.7
Other
School Pupils
With official statement of specia need
In special school

(%,N=156,446)
2.7
1.0

(%,N=8,123,865)
2.8
1.1

*, School-based, usually taken at age 16


Includes apprenticeship
includes non-UK and some other vocational qualifications
source: https://www.gov.uk/government/publications/special-educational-needs-inengland-january-2011

11

Table DS4: Sample characteristics.a

Characteristic

Gender, n (%)
Male
Female
Age group
1829
3044
4564
65+
Ethnic group, n (%)
White
South Asian
Black
Other/missing
Residence
Private household
Communal establishment
Intellectual ability, n (%)b
Profound intellectual disability
Severe intellectual disability
Moderate intellectual disability
Mild/borderline intellectual disability
IQ 7085
IQ 86100
IQ 101+
IQ not assessed
Activities of daily living (ADL)
ADL difficulties, median (IQR)c
ADL with a lot of difficulty, median (IQR)

Moderate to profound intellectual


disability
IDCR (n=217)

No or mild/borderline intellectual disability


IDCR (n=47)

APMS (n=7274)

121 (55.8)
96 (44.2)

19 (40.4)
28 (59.6)

3130 (43.0)
4144 (57.0)

38 (17.5)
62 (28.6)
97 (44.7)
20 (9.2)

13 (27.7)
18 (38.3)
10 (21.3)
6 (12.8)

921 (12.7)
1966 (27.0)
2409 (33.1)
1978 (27.2)

176 (81.1)
29 (13.4)
8 (3.7)
4 (1.8)

42 (89.4)
2 (4.3)
0
3 (6.4)

6700 (92.1)
185 (2.5)
191 (2.6)
198 (2.7)

68 (31.3)
149 (68.7)

9 (19.2)
38 (80.9)

125 (57.6)
58 (26.7)
34 (15.7)
-

47 (100)
-

1006 (13.8)
1829 (25.1)
3916 (53.8)
523 (7.2)

7 (7, 7)
6 (4, 7)

5 (4, 7)
2 (0, 3)

0 (0, 1)
0 (0, 0)
12

Participants with missing data on ADLs, n (%)


13 (6.0)
8 (17.0)
18 (0.2)
Mobility, n (%)
No difficulty
19 (8.8)
20 (42.6)
6253 (86.0)
Some difficulty
66 (30.4)
18 (38.3)
657 (9.0)
A lot of difficulty
132 (60.8)
9 (19.1)
364 (5.0)
Work, n (%)
Never in paid work
185 (85.3)
30 (63.8)
230 (3.2)
Ever in paid work
10 (4.6)
11 (23.4)
6975 (95.9)
Missing
22 (10.1)
6 (12.8)
69 (0.9)
a. This is a more detailed version of Table 1 in the main text.
b. Classified using the Vineland II caregiver rating form26 for the Intellectual Disability Case Register (IDCR) sample, and the National Adult
Reading Test for Adult Psychiatric Morbidity Survey (APMS) sample. 12 adults from the IDCR study are excluded because they could not be
classified.
c. Difficulty with seven ADL including personal care, getting out and about and using transport, medical care, household activities, practical
activities, paperwork and managing money.

13

Epidemiology of autism in adults across age groups and ability


levels

Traolach S. Brugha, Nicola Spiers, John Bankart, Sally-Ann Cooper, Sally McManus, Fiona J. Scott, Jane
Smith and Freya Tyrer
BJP published online July 7, 2016 Access the most recent version at DOI: 10.1192/bjp.bp.115.174649

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