NEW RESEARCH

Caregiver Burden as People With

Autism Spectrum Disorder and
Attention-Deficit/Hyperactivity Disorder
Transition into Adolescence and Adulthood
in the United Kingdom
Tim Cadman, Ph.D., Hanna Eklund, B.A., Deirdre Howley, M.Sc.,
Hannah Hayward, M.Sc., Hanna Clarke, H.S., James Findon, B.Sc.,
Kiriakos Xenitidis, M.D., FRCPsych., Declan Murphy, M.D., FRCPsych,
Philip Asherson, M.B.B.S., MRCPsych, Ph.D., Karen Glaser, Ph.D.

Objective: There is increasing recognition that autism spectrum disorder (ASD) and attention-
deficit/hyperactivity disorder (ADHD) are associated with significant costs and burdens.
However, research on their impact has focused mostly on the caregivers of young children;
few studies have examined caregiver burden as children transition into adolescence and young
adulthood, and no one has compared the impact of ASD to other neurodevelopmental
disorders (e.g., ADHD). Method: We conducted an observational study of 192 families
caring for a young person (aged 14 to 24 years) with a childhood diagnosis of ASD or ADHD
(n ⫽ 101 and n ⫽ 91, respectively) in the United Kingdom. A modified stress-appraisal model
was used to investigate the correlates of caregiver burden as a function of family background
(parental education), primary stressors (symptoms), primary appraisal (need), and resources
(use of services). Results: Both disorders were associated with a high level of caregiver
burden, but it was significantly greater in ASD. In both groups, caregiver burden was mainly
explained by the affected young person’s unmet need. Domains of unmet need most associated
with caregiver burden in both groups included depression/anxiety and inappropriate
behavior. Specific to ASD were significant associations between burden and unmet needs in
domains such as social relationships and major mental health problems. Conclusions: Ad-
olescence and young adulthood are associated with high levels of caregiver burden in both
disorders; in ASD, the level is comparable to that reported by persons caring for individuals
with a brain injury. Interventions are required to reduce caregiver burden in this population.
J. Am. Acad. Child Adolesc. Psychiatry, 2012;51(9):879 – 888. Key Words: caregiver burden,
autism spectrum disorder, attention-deficit/hyperactivity disorder

N
eurodevelopmental disorders such as
autism spectrum disorders (ASD) and
attention-deficit/hyperactivity disorder
(ADHD) are of increasing concern, given their high
cost to health services, individuals, and families.
For example, recent estimates suggest that the cost
This article is discussed in an editorial by Dr. Alice R. Mao on
page 864.
Clinical guidance is available at the end of this article.
to the U.K. economy of supporting children with an
ASD is approximately £2.7 billion ($4.4 billion) each
year, and the cost of supporting adults is much
higher ($40.4 billion each year).1 Moreover, al-
though ASD and ADHD are often thought of as
childhood disorders, both can persist into adoles-
cence and young adulthood. Approximately 96%
of those diagnosed with an ASD as children still
warrant diagnosis in young adulthood.2 The figure
is lower for ADHD, with persistence rates esti-
mated between 15% and 65%, depending on the
diagnostic criteria used.3

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CADMAN et al.
Not only do symptoms persist among young
people (adolescents and young adults) with
these disorders—they also retain significant
impairments. For example, most young people
with an ASD show continued impairments in
daily living skills, communication, social inter-
action, employment, and education.4-7 Young
adults with ADHD tend to achieve greater
independence than their peers with ASDs, but
are still more likely than the general population
to be unemployed,8 to experience more fre-
quent job losses,8,9 to underachieve in educa-
tion,10 to experience instability in emotional
relationships10,11 and to display antisocial
behaviors.12-14
Even though symptoms and impairments
continue among young people with ASD and
abcd ADHD, few services exist to support
individuals with these disorders through
adulthood.15-17 In addition, as these conditions
have been found to be underdiagnosed among
young adults18,19 many are likely to remain
solely reliant on family and friends for assis-
tance. Thus, the situation for most young peo-
ple with an ASD or ADHD is that they continue
to experience symptoms and impairment, but
have limited support from services, and so rely
on families. However, to date, most prior stud-
ies of caregiver burden have largely focused on
caregivers of young children. Little research
has examined the impact on families caring for
adolescents and young adults with ASD (and,
to our knowledge, no studies have investigated
this issue among individuals with ADHD in this
age group). Nevertheless, the few studies that
are available on ASD have reported high levels
of caregiver stress and burden, and this was
greater than in parents caring for adults with
other disabilities such as Fragile-X syndrome
and Down syndrome.20,21
However, to devise appropriate interven-
tions, it is necessary to also identify the factors
associated with burden (i.e., it is not just the
amount of burden that is important, but also
what drives the burden). The research that
does exist on caregiver burden and well-being
among those caring for a young person with an
ASD has focused primarily on family back-
ground factors and young person characteris-
tics. Of these, maladaptive behavior,21-23 physical
health problems,22,24 maternal education,20,23
whether or not the young person lives at
home,23 and the number of other disabled
JOURNAL
880 www.jaacap.org
children cared for in the family20 are associated
with burden. There is conflicting evidence on
the association between the severity of autism
symptoms and caregiver burden once these
family background and young person charac-
teristics are taken into account. One study
found that autism behaviors were associated
with parental stress,20 whereas others found no
association.21,22 Similarly, the evidence for a
significant role of learning (intellectual) dis-
ability in ASD is mixed. Some found that
learning disability is associated with higher
levels of caregiver burden,23,24 whereas others
reported the opposite.22 Comorbid psychiatric
problems were not found to be associated with
burden once other child characteristics were
taken into account.23 In contrast, the few stud-
ies investigating burden among those caring
for young children with ADHD consistently
reported that ADHD symptomatology, includ-
ing both inattentiveness and hyperactivity/
impulsivity, is associated with greater bur-
den.25-27 Hence, prior evidence suggests that
factors other than disease severity (such as
maladaptive behavior) may be more important
for caregiver burden in ASD than ADHD.
However, family background and young per-
son characteristics are only two components of
the stress process; also relevant are the caregiv-
er’s appraisal of care needs, and use of re-
sources.28 Two studies found no association be-
tween use of services and burden with children29
and adults with ASD,30 whereas a study of
children with ADHD found that the use of com-
munity resources was associated with increased
stress.26 The caregiver’s appraisal of met and
unmet need is important, as it may significantly
contribute to their perceived burden. Neverthe-
less, no studies have investigated this relation-
ship in the caregivers of young people with ASD
or ADHD.
In summary, few studies have investigated the
correlates of burden among those caring for
young people with these disorders. Moreover, to
our best knowledge, no studies have compared
levels of burden between young people with
ASD and ADHD. Hence, we used a modified
stress appraisal model28 to examine the correlates
of caregiver burden in these two groups and,
specifically, the relationship between burden and
reported level of symptoms, needs, and service
use.
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VOLUME 51 NUMBER 9 SEPTEMBER 2012

METHOD
Sample
We included 192 families consisting of young people
aged 14 to 24 years (n ⫽ 87 with ASD and n ⫽ 86 with
ADHD) and their parents (mostly mothers; n ⫽ 101
with ASD and n ⫽ 91 with ADHD). Families were
recruited through their child’s childhood clinical diag-
nosis of an ASD or ADHD from Community Adoles-
cent Mental Health Services (CAMHS) and adult clin-
ics, charities, and research databases that form part of
our clinical research networks. Clinical diagnosis of
autism was confirmed in all cases using the Autism
Diagnostic Interview—Revised,31 and ADHD (com-
bined type) was defined using the DSM-IV criteria. As
participants in the ADHD group were originally re-
cruited for the International Multi-Centre ADHD Ge-
netics (IMAGE) project, they were excluded if they had
been diagnosed with autism, epilepsy, general learn-
ing difficulties, brain disorders, or any genetic or
medical disorder associated with externalizing behav-
iors that might mimic ADHD based on both history
and clinical assessment.
Measures
Face-to-face structured interviews and self-completion
questionnaires were administered to both the affected
young persons and their parents. We used Casado and
Sacco’s modified stress appraisal model28 to investi-
gate the correlates of caregiver burden. The model
includes the following components as potential corre-
lates of caregiver burden: family background char-
acteristics (parental education); primary stressors
(ADHD or ASD symptoms, learning disability, and
measures of psychiatric comorbidities); a primary ap-
praisal (a measure of need); and resources (use of
services). This model was based on the stress appraisal
model of Yates et al.32 incorporating the two main
theories regarding caregiver burden: the appraisal
model,33 and the stress process model.34 The stress
appraisal model of Yates et al32 consisted of five
components: primary stressors (e.g., level and type of
disability); primary appraisal (the caregiver’s subjec-
tive appraisal of care need); resources (individual and
societal resources that may affect the stressor such as
the level of formal help); secondary appraisal (often
measured as caregiver burden); and outcome (psycho-
logical well-being). Casado and Sacco28 altered this
model by adding a family background component
from Pearlin’s34 stress process model (family socio-
demographic background) and by conceptualizing
caregiver burden as an outcome. Thus, we propose
that family background, the young person’s level of
symptoms and psychological comorbidities, parental
perceptions regarding the need for care, and resources
lead to perceptions of burden.
Caregiver burden was measured using the Zarit
Burden Interview–12 Item.35 It captures the psycholog-
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CAREGIVER BURDEN IN ASD OR ADHD AT TRANSITION
ical and social impact of caring and asks respondents
to rate the extent to which they agree or disagree with
statements regarding their feelings about the results of
caring on a five-point scale, with possible responses
ranging from 0 (“never”) to 4 (“nearly always”). A
total score (0 – 48) was calculated by summing the
scores for each question. This short-form version of the
scale has been shown to have excellent reliability and
validity.36
To investigate the correlates of caregiver burden,
the analyses presented used variables that best cap-
tured the components described above and that had
previously been found to be significant.23,26 Family
background characteristics included parent education
and occupation and whether a parent provided care
for anyone else.
Primary stressors included measures of ASD and
ADHD symptoms, learning disability, as well as an
indicator of other psychological comorbidities. Cur-
rent severity of ASD symptoms were captured using
the Autism Quotient–Informant version with scores
over 32 indicating an ASD.37 To measure ADHD
symptoms, both parents and young people completed
the Barkley Informant Rating Scale for adults with
scores of 6 or greater defined as exceeding the DSM-IV
threshold and thus being clinically significant.38
Learning disability (i.e., intellectual disability)
was based on parental reports of any medical diag-
noses that the young person had received. Young
persons were recorded as having a learning disability
if it was reported by their parents, or if they were
referred to the study by a clinician who indicated the
presence of a learning disability.
As persons with ASD frequently have significant
difficulties with self-report of psychological symptoms
in this group, information on psychological comorbidi-
ties was assessed using the informant version of the
Strengths and Difficulties Questionnaire (SDQ).39 The
SDQ is a screening questionnaire for mental health
problems containing five subscales comprising 5 items
each: conduct problems, emotional symptoms, hyper-
activity, peer problems, and prosocial behavior. The
SDQ has good psychometric properties40 and has been
shown to be effective in identifying individuals with
conduct– oppositional disorders, anxiety– depressive
disorders, and hyperactive–inattentive disorders.41
The SDQ has also been used in studies with older
adolescents42,43 and adults.44
In contrast, individuals with ADHD do not typi-
cally show the same level of difficulties describing
symptoms. Hence, for the ADHD group, the Clinical
Interview Schedule–Revised (CIS-R) was used to as-
sess psychological comorbidities.45 It is a standard-
ized, valid, and reliable structured diagnostic instru-
ment used for rating comorbid psychiatric symptoms
across 14 domains (e.g., anxiety, depression) and has
been widely used in both clinical and the general
population.46,47 A total score of 12 or more is regarded
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as clinically significant.45 This instrument was not
deemed to be appropriate for use with young people
with ASD, as there is no informant version.45
The caregiver’s primary appraisal of caregiving
need for both disorders was captured using the Cam-
berwell Assessment of Need for Adults with Develop-
mental and Intellectual Disabilities (CANDID-R).48 It
assesses needs across 25 domains, including social,
physical, mental health, self-care, and practical needs.
As caregiver perceptions are an important component
of the stress process,28 both caregiver and self-rated
assessments of need were included.
In relation to resources, we conceptualized this as
the young person’s use of services. To capture service
use we used a modified version of the Client Services
Receipt Inventory (CSRI).49
Data Analysis
Two-tailed t tests and ␹2 tests were used as appropri-
ate to examine differences in the key sample charac-
teristics and study variables between the two neuro-
developmental groups. Sequential linear regression
models of the correlates associated with caregiver
burden were conducted for both groups separately
and the combined sample using SPSS version 18.0
(SPSS Inc, Chicago, IL). As different measures of
psychiatric comorbidity and symptomatology were
used for ASD and ADHD, for the combined model two
new variables were derived indicating whether the
cut-off score was reached on the respective measure
(SDQ/CISR and AQ/Barkley), with participants
coded as 1 if they met cut-off, and 0 if not. Finally, to
investigate which specific needs were associated with
caregiver burden, point-biserial correlations were cal-
culated. The following procedure was used to account
for missing data. For cases in which less than 10% of
responses were missing from a given measure, the
value was imputed from the mode of the answered
questions. For example, if answers to three questions
were missing on the AQ, their value was imputed from
the mode of the other 47 responses. If more than 10%
of answers were missing from any outcome measure,
all data for that caregiver–young person pair was

TABLE 1 Descriptive Characteristics of Study Sample and Variables Autism Spectrum Disorder (ASD; n ⫽ 89) and
Attention-Deficit/Hyperactivity Disorder (ADHD; n ⫽ 81)
ASD ADHD

Variable % Mean (SD) Range % Mean (SD) Range Significance Test

YP age 17.57 (2.87) 14–24 17.47 (2.28) 14–22 df ⫽168, t ⫽ 0.26

YP male 92 89 df ⫽ 1, ␹2 ⫽ 0.52
PR age 49.02 (5.89) 38–64 47.60 (5.44) 36–59 df ⫽ 167, t ⫽ 1.65
PR female 93 96 df ⫽ 1, ␹2 ⫽ 0.33
YP education df ⫽ 2, ␹2 ⫽ 1.67
Full-time 67 57
Part-time 8 9
Not in education 25 35
PR education df ⫽ 1, ␹2 ⫽ 12.58***
Low 38 65
High 62 35
YP accommodation df ⫽ 1, ␹2 ⫽ 0.19
Family home 90 88
Other 10 12
YP AQ symptoms 35.56 (5.54) 22–46
YP ADHD symptoms 10.63 (4.73) 0–18
YP learning disability 15 0
YP SDQ total 20.51 (7.04) 4–36
YP CISR 7.85 (6.34) 0–29
YP total needs 9.90 (3.55) 0–18 5.01 (3.12) 0–14 df ⫽ 168, t ⫽ 9.51***
Met 6.58 (2.72) 0–12 2.60 (2.31) 0–11 df ⫽ 167.26, t ⫽ 10.31***
Unmet 3.31 (2.89) 0–11 2.41 (2.23) 0–9 df ⫽ 163.70, t ⫽ 2.30*
YP in contact with services 58 56 df ⫽ 1, ␹2 ⫽ 0.14
Zarit Caregiver Burden 22.66 (8.84) 4–41 17.80 (9.18) 0–38 df ⫽ 168, t ⫽ 3.52**

Note: AQ ⫽ Autism Quotient; CISR ⫽ Clinical Interview Schedule—Revised; PR ⫽ parent; SDQ ⫽ Strengths and Difficulties Questionnaire; YP ⫽ young
person.
*p ⬍ .05, **p ⬍ .01, ***p ⬍ .001.

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excluded from the analysis. The final sample size used
in our analysis was 89 parents and 77 young persons
with ASD, and 81 parents and young persons with
ADHD.
RESULTS
Sample Characteristics
Young persons in the two groups were similar in
age, gender (⬃90% male), education (⬃70% in
education), and accommodation (⬃90% lived at
home) (Table 1). Caregiver socio-demographic
characteristics in the two groups were also
broadly similar. All of the caregivers were either
a biological or an adoptive parent. Caregivers
from the two samples showed similar gender and
marital status distributions (72% ASD were mar-
ried versus 78% of ADHD, ␹2 ⫽ 0.77, p ⫽ .38). In
addition, approximately 35% of parents in both
groups provided care for someone else aside
from their child with ASD/ADHD (␹2 ⫽ 0.28, p ⫽
.60). Caregivers from the two samples were also
comparable in terms of age (mean ⫽ 49.02, SD ⫽
5.89 ASD versus mean ⫽ 47.6, SD ⫽ 5.44, t ⫽ 1.65,
p ⫽ .10). There were, however, significant differ-
ences in occupation of the two caregiver groups;
parents of ASD were in higher occupational
groups (managerial/professional and associate
professional/administrative) (55% ASD versus
42% ADHD, ␹2 ⫽ 12.54, p ⫽ .01).
Caregiver Burden and Study Variables
Caregiver burden was high in both groups, but it
was significantly higher in the ASD group than in
ADHD (mean ⫽ 22.66, SD ⫽ 8.84 ASD versus
mean ⫽ 17.80, SD ⫽ 9.18 ADHD, t ⫽ 3.52, p ⫽
.001). Family background (parental education)
was significantly different, with 62% of parents in
the ASD group being in the highest educational
category compared with 35% in ADHD (␹2 ⫽
12.58, p ⬍ .001). Primary stressors (i.e., symp-
toms, learning disabilities, and psychiatric co-
morbidities) also showed significant differences
between the two groups. The mean current se-
verity of ASD as measured by AQ score for the
ASD group was 35.56 (SD ⫽ 5.54), with 73% of
this group showing AQ scores above the sug-
gested cut-off of 32. The mean Barkley current
symptom score for the ADHD group was 10.63
(SD ⫽ 4.73). Using a cut-off of greater than 5 on
the Barkley, 58% met threshold for inattentive-
ness, 42% for hyperactivity, and 36% for com-
bined ADHD. Of the ASD group, 15% had
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CAREGIVER BURDEN IN ASD OR ADHD AT TRANSITION
previously been diagnosed with a learning
disability, compared with none of the ADHD
group. In terms of psychiatric comorbidities, the
mean SDQ score for the ASD group was 20.51
(SD ⫽ 7.04), with 70% scoring in the abnormal
range (⬎16). Of the autism group, 55% also
scored in the abnormal range on the hyperactiv-
ity subscale of the SDQ (⬎6). The mean CIS-R
score for the ADHD group was 7.85 (SD ⫽ 6.34),
with 27% of the ADHD group scoring 12 or
greater, indicating the presence of a common
mental disorder.
Need, our measure of primary appraisal, also
showed significant differences between the two
groups, with the needs of those with an ASD (as
rated by caregivers) being significantly higher
(mean ⫽ 9.90, SD ⫽ 3.55, ASD vs mean ⫽ 5.01,
SD ⫽ 3.12, t ⫽ 9.51, p ⬍ .001). We used service
use to conceptualize resources; there was little
difference in this indicator between the two
groups; 58% of the ASD group and 56% of the
ADHD group were currently being seen by
health services.
Tables 2 to 4 present the sequential multiple
regression models used to examine the correlates
of caregiver burden. Separate models were pro-
duced for each condition, as well as a model
combining both conditions. Variables represent-
ing family background characteristics (parental
education) were first entered into the model,
followed by those capturing primary stressors
(symptoms, learning disability for ASD, and psy-
chiatric comorbidities), primary appraisal (need)
and resources (use of services). For both samples,
caregiver-rated need was a significant correlate
of burden even after other factors were con-
trolled for (Tables 2 and 3). In addition, once
need was controlled for severity of disorder
symptoms were no longer a significant predictor
of burden for ASD but they remained significant
for ADHD (Table 3, Model 3). Conversely, al-
though psychiatric comorbidites were a signifi-
cant predictor of burden for ASD, they were not
for ADHD. Given that approximately half of the
ASD group also met the threshold on the SDQ
hyperactivity scale, we also investigated whether
ADHD symptomatology was associated with
burden for the ASD group. When the SDQ hy-
peractivity subscale was included as a separate
variable in the model (along with a variable
comprising the total score from the other three
subscales), the hyperactivity subscale was not
significantly associated with burden.
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TABLE 2 Linear Regression Model for Predictors of Caregiver Burden (Autism Spectrum Disorder [ASD]; n ⫽ 89)
Model 1 Model 2 Model 3 Model 4

Adjusted R2 0.01 0.28 0.35 0.34

F change 0.49 9.56*** 10.37*** 8.61***

ASD B ␤ B ␤ B ␤ B ␤

Correlates (reference groups)

Family background
Parent education (high) ⫺1.36 ⫺0.08 ⫺2.64 ⫺0.15 ⫺2.31 ⫺0.13 ⫺2.44 ⫺0.14
Primary stressor
LD 0.36 0.01 ⫺1.01 ⫺0.04 ⫺0.99 ⫺0.04
ASD Symptoms 0.03 0.02 ⫺0.00 ⫺0.00 ⫺0.00 ⫺0.00
Psychiatric comorbidities 0.70*** 0.56 0.52*** 0.41 0.51*** 0.41
Primary appraisal
Need 0.77** 0.31 0.74** 0.30
Resources
Service use (no service use) 0.86 0.05

Note: LD ⫽ learning disability.

**p ⬍ .01, ***p ⬍ .001.

In the combined model, need and comorbid
psychopathology were significant predictors of
burden, whereas having a diagnosis of either an
ASD or ADHD was not (Table 4). The models
explain 34% of the variance in caregiver burden
among those caring for a young person with an
ASD (Table 2) in comparison to 23% in the
ADHD group (Table 3). Further models were run
for both disorders using the young person’s
assessment of their needs; however, no relation-
ship was found with parental burden.
To further explore the relationship between
need and burden, the models above were run
with unmet and met need instead of total need
(not shown). Results showed that only unmet
need was significantly associated with care-
giver burden. The models using unmet need
instead of total need accounted for 42% of the
variance in burden for the ASD group and 26%
for the ADHD group. To investigate these
results further, additional bivariate correlations
were calculated between individual CANDID

TABLE 3 Linear Regression Model for Predictors of Caregiver Burden (Attention-Deficit/Hyperactivity Disorder
[ADHD]; n ⫽ 81)
Model 1 Model 2 Model 3 Model 4

Adjusted R2 ⫺0.01 0.16 0.23 0.23

F change 0.20 5.99** 6.97*** 5.75***

ADHD B ␤ B ␤ B ␤ B ␤

Correlates (reference group)

Family background
Parent education (high) ⫺0.30 ⫺0.02 0.29 0.02 ⫺0.26 ⫺0.01 ⫺0.13 ⫺0.01
Primary stressor
ADHD Symptoms 0.69** 0.36 0.48* 0.25 0.44* 0.23
Psychiatric comorbidities 0.34* 0.24 0.29* 0.20 0.28 0.19
Primary appraisal
Need 0.90** 0.31 0.88** 0.30
Resources
Service use (no service use) 1.78 0.10

Note: *p ⬍ .05, **p ⬍ .01, ***p ⬍ .001.

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TABLE 4 Linear Regression Model for Predictors of Caregiver Burden (Autism Spectrum Disorder [ASD] and
Attention-Deficit/Hyperactivity Disorder [ADHD]; n ⫽ 170)
Model 1 Model 2 Model 3 Model 4

Adjusted R2 0.01 0.15 0.29 0.29

F change 2.23 6.79*** 12.25*** 10.87***

B ␤ B ␤ B ␤ B ␤

Correlates (reference group)

Family background
Parent education (high) ⫺2.12 ⫺0.12 ⫺0.14 ⫺0.01 ⫺0.64 0.03 ⫺0.72 0.04
Primary stressor
ASD (ADHD) 2.44 0.13 ⫺1.95 ⫺0.11 ⫺1.72 ⫺0.09
LD 0.05 0.00 ⫺1.77 ⫺0.05 ⫺1.73 ⫺0.05
SDQ ⬎ 16/CISR⬎11 (16/11 or less) 4.87** 0.26 3.16* 0.17 3.15* 0.17
AQ ⬎ 32/Barkley Inn/hyp ⬎ 5 (32/5 or 3.50* 0.18 2.28 0.11 2.15 0.11
less)
Primary appraisal
Need 1.10*** 0.49 1.04*** 0.46
Resources
Service use (no service use) 1.81 0.10

Note: AQ ⫽ autism quotient; CISR ⫽ Clinical Interview Schedule—Revised; Inn ⫽ inattention; hyp ⫽ hyperactivity; LD ⫽ learning disability; SDQ ⫽
Strengths and Difficulties Questionnaire Total Score.
*p ⬍ .05, **p ⬍ .01, ***p ⬍ .001.

items and caregiver burden. Table 5 shows the TABLE 5 Significant Correlations Between Items Rated
individual domains of unmet need that were by Parent as an Unmet Need and Caregiver Burden
significantly correlated with burden in the two (Autism Spectrum Disorder [ASD], n ⫽ 89, and
groups. Unmet needs related to depression/ Attention-Deficit/Hyperactivity Disorder [ADHD],
anxiety, inappropriate behavior, exploitation n ⫽ 81)
risk, aggression/violence, and daytime activi-
Correlation % of Sample
ties were significantly correlated with burden with Zarit Reporting
for both samples. Specific to the ASD sample CANDID Item of Unmet Need (r) Unmet Need
were significant correlations between burden
and unmet needs relating to social relation- ASD
ships, mental health problems, safety of self, Depression/anxiety 0.38** 37
and communication. Exploitation risk 0.36** 20
Major mental health problems 0.35** 11
Social relationships 0.35** 43
Inappropriate behavior 0.33** 25
DISCUSSION Daytime activities 0.31** 25
We explored, for the first time, the levels, and Safety of self 0.29** 10
correlates, of burden among parents caring for a Communication 0.28** 21
young person with ASD or ADHD at transition Sexual expression 0.27* 3
from adolescence and young adulthood and the Aggression/violence 0.24* 14
relationship between caregiver perceptions of ADHD
their child’s need (met and unmet) and their own Exploitation risk 0.32** 14
Aggression/violence 0.29** 14
burden. Caregivers in both groups had very high
Inappropriate behavior 0.28* 30
levels of burden that equate with those caring for
Depression/anxiety 0.27* 11
individuals with very serious medical disorders, Daytime activities 0.25* 20
and there was preliminary evidence that burden
was significantly higher in the ASD group. For Note: CANDID ⫽ Camberwell Assessment of Need for Adults with
example, level of burden among caregivers of Developmental and Intellectual Disabilities.
*p ⬍ .05, **p ⬍ .01.
young persons with an ASD was comparable to

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CADMAN et al.
that for caregivers of persons with acquired brain
injury, and levels for caregivers of persons with
ADHD were comparable to caregivers of those
with dementia.36
Similar to previous studies, we found that
current severity of symptomatology of the core
disorder is associated with caregiver burden
for ADHD but not ASD,22,27 once other poten-
tially relevant factors were controlled for. Con-
trary to some prior work,23 comorbid psychiat-
ric symptoms were significantly associated
with caregiver burden among the ASD but not
the ADHD group. Previous studies have also
found that the presence of physical health
problems is associated with higher levels of
burden.22,24 To examine this, we explored cor-
relations between the CANDID item assessing
physical health needs and caregiver burden;
however, no association was found. Similarly,
there was no relationship between presence of
a learning disability and caregiver burden.22,23
Given the fact that few specific autism services
(especially for those who are high functioning)
are available, our finding that burden is signif-
icantly associated with comorbid psychiatric
symptoms and needs in the ASD group sug-
gests that autism-specific services targeting
multiple conditions may be beneficial in reduc-
ing disease burden.
For both disorders, level of unmet need was a
significant predictor of burden even after other
potential contributing factors (e.g., symptomatol-
ogy) were taken into account. This suggests that
it is not just family background factors and
primary stressors that contribute to caregiver
burden among those caring for a young person
with ASD/ADHD, but also the caregiver’s ap-
praisal of the level of unmet need. Unmet needs
significantly correlated with burden for both dis-
orders were depression and anxiety, exploitation
risk, inappropriate behavior, and aggression/
violence. Specific to ASD were significant associ-
ations between burden and unmet needs con-
cerning social contact, major mental health
problems, appropriate daytime activities, safety
of self, and communication. Our results suggest
that targeted interventions to meet the needs of
young persons with ASD and ADHD in these
domains may also act to reduce caregiver bur-
den. However, it is important to note that burden
was associated with parental perceptions of un-
met need, not the affected young persons’ per-
ceptions of their own unmet needs. This suggests
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886 www.jaacap.org
the need for a holistic approach to assessment
and treatment of young persons; it may be im-
portant to consider not only their own assess-
ment of needs but also their parents’ perceptions
of needs, as this is significantly associated with
caregiver burden.
This study has a number of limitations. First,
we did not have a direct measure of maladap-
tive behavior, although it is likely that the
measures used (e.g., of need and psychiatric
comorbidites) also captured behavioral diffi-
culties. Second, our ASD sample appears to be
higher functioning than ASD samples that have
been investigated in other studies. For exam-
ple, approximately 15% of our sample was
diagnosed with a learning disability, in com-
parison to a prevalence of 56% found by others
in a population cohort of children.50 Also, there
is increasing recognition that many individuals
with ASD do not have intellectual disability.
Even so, caregivers of these higher-functioning
individuals still describe a very significant
level of burden. Hence, public health policies
should not assume that relatively higher-func-
tioning ASD individuals and their caregivers
do not also have significant (and unmet) needs.
Third, the gender balance of the young persons
in both the ASD and ADHD samples was not
representative of the respective populations. A
male-to-female ratio of 3.3:1 was reported in a
study of children with ASD,50 and a male-to-
female ratio of 1.6:1 was reported in a study of
adults with ADHD.51 By contrast, our samples
had ratios of approximately 9:1. In addition,
almost all caregivers in the study were moth-
ers. Given that studies in ASD and ADHD have
found having a male child to be associated with
higher levels of burden,22,27 and that levels of
burden have been reported to be higher in
mothers rather than fathers52 our results may
overestimate the level of burden in this popu-
lation. Fourth, whereas a measure of ADHD
symptomatology was included for the ASD
sample (the hyperactivity/inattention subscale
of the SDQ), no corresponding measure of ASD
symptomatology was included for the ADHD
sample. Although the ADHD sample was
screened for ASD in childhood, mild autism
traits could still have been present; however,
we were unable to consider the affect of these
traits on caregiver burden. Fifth, this initial
study was cross-sectional and is therefore able
to examine associations of need and caregiver
OF THE AMERICAN ACADEMY OF CHILD & ADOLESCENT PSYCHIATRY
VOLUME 51 NUMBER 9 SEPTEMBER 2012

burden at only one point in time. Future lon-
gitudinal research is required to determine
whether input from formal services signifi-
cantly reduces parental burden. Sixth, there
was some reduction in sample size because of
missing data. As the CIS-R in the ADHD group
was taken from the young person’s interview,
analyses focused on those families with both a
parent and young person interview (i.e., of 86
paired interviews, 81 contained complete infor-
mation). For the ASD group, analyses focused
on the parent interviews, as these contained the
necessary measures. The sample size for this
group dropped from 101 to 89 largely because
of missing data on the SDQ. Finally, differences
in the relationship between comorbidities and
caregiver burden in the two groups may be due
to differences in the way that this information
was collected, i.e., through self-reports in the
ADHD group using the CIS-R, and through
informant reports in the ASD group using the
SDQ.
This study has shown that caregivers of
adolescents and young adults with ASD and
ADHD experience very high levels of burden.
Many of the young persons have needs that are
currently unmet by services, and the level of
unmet need is significantly associated with
caregiver burden. These high levels of burden
are likely to have an impact on the parents’
health53 and their ability to continue providing
care. Interventions to screen for and target
depression/anxiety, exploitation risk, inappro-
priate behavior, and aggression could help to
reduce burden on caregivers of young persons
with ASD and ADHD. Interventions to im-
prove the young persons’ communication and
social relationships, to provide appropriate
daytime activities, and to treat mental health
problems could also act to alleviate burden on
caregivers of individuals with ASD. &
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Clinical Guidance
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Accepted June 27, 2012.
Drs. Cadman and Murphy, and Ms. Eklund, Ms. Howley, Ms.
Hayward, Ms. Clarke, and Mr. Findon are with the Institute of
Psychiatry, King’s College London. Dr. Xenitidis is a consultant psychi-
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(ADHD) Service at the Maudsley Hospital. Dr. Asherson is with the
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The research was funded by the National Institute for Health Research (NIHR)
Programme Grants for Applied Research (PGfAR). The authors alone bear
responsibility for the collection, analysis, and interpretation of the data.
Funding was also provided by The National Institute for Health Research
Biomedical Research Centre for Mental Health at King’s College London,
Institute of Psychiatry, and South London and Maudsley National Health
Service Foundation Trust.
Disclosure: Drs. Cadman, Xenitidis, Murphy, Asherson, and Glaser, and Ms.
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Science, Health and Medicine, King’s College London, Strand,
WC2R 2LS, UK; e-mail: karen.glaser@kcl.ac.uk
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