Presentation, assessment and treatment of depression in a young woman with learning disability and autism

CASE REPORT

Presentation, assessment andtreatment of depression in ayoung woman with learningdisability and autism

Karen Long, Harry Wood and Nan Holmes Weston Green Resource Centre, Weston Green

Road, Thames Ditton, Kingston, Surrey KT7 0HY, UK

Summary The association between autism and affective disorders in adults with learning dis-

ability (LD) is reviewed, alongside a discussion of some of the problems identi®ed

with the accurate differential diagnosis of depression in individuals with more

severe impairment. This case study describes the presentation, differential diagnosis

and treatment of a young woman with a severe LD, autism and depression. Beha-

vioural factors which were felt to re¯ect this individual's depressive disorder, but

which are not usually associated with the diagnosis of depression, are highlighted.

Further work on the development and re®nement of a reliable method of assessing

depression in individuals with LD and autism is discussed.

Keywords Autism, depression

Introduction

The thoughts and feelings of adults with learning disability

(LD) have received increased consideration over the past 2

decades of research. Seminal papers within the LD special-

ity have included: investigations into the thoughts and feel-

ings of clients within a psychotherapeutic context

(Symington 1981; Bailey et al. 1986); the assessment of

depressed thoughts and feelings (Kazdin et al. 1983; Meins

1996); and the assessment and treatment of anxiety (Lindsay

et al. 1989). Despite attempts to investigate the develop-

ment, nature, consistency and stability of emotions experi-

enced by adults with LD, there still remains a signi®cant

lack of detailed understanding of these areas.

The importance of being able to accurately diagnose

depression in people with LD has been stated in several

reports (Matson et al. 1980; Edelstein & Glenwick 1997).

People with LD are thought to be particularly vulnerable to

affective disorders because of the lack of control that they

often experience. Jacobsen & Schwartz (1983) found an

increased incidence in clients when there was a risk of com-

munity placement breakdown, labelling, rejection or infanti-

lization. Reiss & Benson (1985) also suggested that the

reduced opportunities many people with LD have in their

lives makes them vulnerable. Similarly, reports have shown

that there is an increased incidence of depression in people

with Asperger syndrome (Tantam 1991), and therefore, it

can be argued that people who suffer from autistic traits are

also more vulnerable (Abramson et al. 1992).

However, the dif®culties experienced by many people

with LD in terms of communicating their thoughts and feel-

ings make all forms of psychological and psychiatric distur-

bance, not least unipolar depression, particularly dif®cult to

diagnose. Pawlarcyzk & Beckwith (1987) have shown that

the DSM-III (APA 1980) criteria for depression may be of

limited use when working with people who are more

severely impaired. Symptoms such as a reduction in the

ability to think and disturbances in concentration are often

attributed to the person's LD rather than to any change in

affective functioning (diagnostic overshadowing). Similarly,

Meins (1995) and Edelstein & Glenwick (1997) noted beha-

viours and features associated with depression in people

with LD which are not identi®ed in the DSM [e.g. increased

self-injurious behaviour (SIB), vomiting, aggression, scream-

= 2000 British Institute of Learning Disabilities, British Journal of Learning Disabilities, 28, 102±108102

ing, incontinence and stereotypies]. Therefore, the diagnosis

of depression in people with LD often relies heavily on

interpretation/inference based on behavioural observations

and questioning carers. However, several studies have

reported on the use of surveys, questionnaires and semi-

structured interviews with both clients and their carers to

assess depression (e.g. Kazdin et al. 1983; Benson et al. 1985;

Reynolds & Miller 1985; Reynolds & Baker 1988; Benavidez

& Matson 1993; Meins 1993, 1996). Diagnosing depression

in people with severe LD and autism is an even more com-

plex area.

The present paper explores the presentation, assessment,

differential diagnosis and treatment of depression in a

young woman with severe LD and autism.

Case report

History

Ms X was a 19-year-old woman with autism and a history

of challenging behaviour, i.e. behaviour `of such an inten-

sity, frequency or duration that the physical safety of the

person or others is placed in serious jeopardy . . . ' (Emerson

et al. 1982). She was an only child. Her parents were both in

their mid-thirties when she was born. X's mother suffered

from depression. There was no history of psychiatric illness

on X's paternal family side. The family did not have a large

support network.

A diagnosis of autism was originally made at the Mauds-

ley Hospital when X was aged 2 years and 6 months. No

information was available as to what classi®cation system

or set of criteria were used to make the diagnosis at this

time.

She began attending a school for children with LD at the

age of 4 years and moved into full-time residential care at

the age of 6 years. Notes from X's early years in care

referred to her displaying SIB; for example, head banging,

kicking herself and refusing food. Early records stated that

these behaviours increased in severity when she moved into

full-time residential care, and subsequently, in her early

teenage years, when she also began hitting out at staff and

her peers. When X reached 18 years of age, her school place-

ment was terminated following staff reports that they were

unable to continue to provide a service for her or to main-

tain a safe environment.

She moved to a specialist health service assessment and

treatment unit for adults with LD in June 1997 for a com-

prehensive multidisciplinary assessment of her needs prior

to identi®cation of a long-term residential placement.

Presentation

On arrival, X was found to have extremely limited commu-

nication skills. She had very little spoken language, most of

which was based on her own neologisms. X knew few

Makaton signs. Her social interaction was limited to repeat-

ing single-word requests for biscuits, car rides or parties.

She made no attempt to interact with other residents. X was

also noted to have a number of ritualistic/repetitive beha-

viours: for example, she kept her arms inside her sleeves

and wore a hat constantly, and would balance any item

that was small enough on her head (e.g. pens, cushions and

tea towels). The diagnosis of autism according to the DSM-

IV criteria (APA 1994) was con®rmed by the multidisciplin-

ary team. Subsequent assessment of X's intellectual level

using the Leiter International Performance Scale (Leiter

1980) revealed that her IQ was 38.

Physical health and epilepsy

X was a tall, thin woman (height� 1�78 m, weight 1 46.35

kg). She suffered repeated urinary tract infections and was

on a daily dose of amoxycillin to help prevent these. X was

also on a low dose of carbamazepine because it was felt

that she might have been experiencing some form of epilep-

tic activity. At times, she would begin breathing heavily

and jerk her head backwards, or to the right side, and she

was known to have experienced six generalized seizures in

the years leading up to her admission to the assessment

and treatment unit. X had undergone a full medical exami-

nation, including a pelvic examination, under general

anaesthetic shortly before her admission. No major physical

abnormalities were detected.

Challenging behaviour

On admission, X's challenging behaviour included: SIB in

the form of hitting, kicking and punching herself, hitting

out at others, screaming and shouting for extended periods

of time, and refusing to join in group and individual activ-

ities.

Table 1 summarizes X's repertoire of challenging beha-

viours on admission to the unit.

Assessment

A comprehensive psychological assessment of X's beha-

viour began on admission. Staff working with her were

asked to complete detailed monitoring of the antecedents

and consequences of each individual episode of challenging

behaviour. Direct observations of her behaviour were car-

ried out at different times during the day by the assistant

psychologist, and videos were taken of X's challenging

behaviour to allow more detailed analysis by the clinical

team. Regular meetings (initially weekly) were held with

X's key workers to discuss the monitoring to ensure that

consistent records were kept. Table 2 and Fig. 1 show the

103Depression, learning disability and autism


monthly frequencies of SIB taken from the monitoring

forms completed after each incident.

X was assessed by her general practitioner, who could

®nd no physical complaint that might have caused her chal-

lenging behaviour, and by a neurologist, who found no evi-

dence of epileptic activity at the time of assessment.

Formulation

The initial formulation made by the clinical psychologists

and other members of the multidisciplinary team was that

X's challenging behaviour was related to her frustration at

her inability to express her needs and desires effectively.

Much of her behaviour might have been caused by her lim-

ited communication skills. In addition to this, it was

stressed that X had been through several major life events

(i.e. leaving school and moving residential placement)

which were likely to have upset her routine and could have

caused her considerable distress. It was also felt that aspects

of her challenging behaviour could be self-stimulatory in

function.

Initial treatment

Detailed communication guidelines, including lists of the

Makaton signs and neologisms X used, and the meanings of

these symbols and utterances, were developed by the

speech and language therapist to facilitate communication

with X. These were used extensively in order to ensure that

all staff working with X were better able to understand her

communication. The speech and language therapist began

working with X to build on her use and understanding of

Makaton symbols.

She was assigned a one-to-one support worker to carry

out a highly structured activity programme, which was

designed by the Clinical Psychology Department and based

on many of the activities which X had enjoyed doing at

school. This provided her with stimulation and routine

until a suitable day placement could be identi®ed.

A reward programme, i.e. psychological intervention 1,

was started on 1 September 1997 which involved her being

given a sticker for every 15-min period in which she dis-

played no challenging behaviour during the day. However,

this programme was eventually discontinued because there

was no clear evidence that it was reducing the frequency of

challenging behaviour and staff felt that the process of

choosing a sticker had become a `chore' for X (see Fig. 1).

Secondary presentation

Although the initial frequency of X's challenging behaviour

was high (e.g. 25 incidents of SIB in August), staff who

were already experienced in working with people with

challenging behaviour felt that they were able, with the

support of the multidisciplinary team, to manage her beha-

viour and work with her to reduce the frequencies. Since X

had recently moved to the placement, this level of SIB pro-

vided a baseline. However, in October, several months after

her admission, X's SIB became much worse and reached a

level at which staff felt that her health and safety were at

risk (e.g. 115 incidents in a month). At the worst point, X

was engaged in SIB for up to 16 h a day. She remained in

her room and showed no interest in becoming involved in

activities, or in eating and drinking. Staff found that the

only way of safely protecting X during these extended peri-

ods of SIB was to sit with her and physically protect her

head, arms and legs. At times, it took three members of

staff to achieve this.

Table 1 Summary of challenging behaviours observed in the subject

Challenging behaviour Details

Self-injurious behaviour Hair pulling, hitting, kicking, scratching,

pinching, head banging and rectal

probing

Aggression to others Hair pulling, hitting, kicking and pinching

Screaming Over extended periods of time

Moaning Over extended periods of time

Shouting Over extended periods of time

Disengagement and isolation Withdrawal from groups and activities

Incontinence Including both nocturnal and diurnal

urinary and faecal incontinence, and

smearing

Table 2 Frequency of self-injurious behaviour (SIB) and dates of med-

ication changes

Date

Frequency

of incidents

of SIB Medication changes

August 25 ±

September 54 ±

October 115 Thioridazine (morning dose begun

11 October 1997; morning and

evening doses stopped 23 October 1997)

Paroxetine (begun 23 October 1997)

Zopiclone (begun 28 October 1997)

November 43 ±

December 12 ±

January 16 ±

February 37 Zopiclone (stopped 3 February 1998)

March 17 ±

April 7 ±

104 K. Long et al.


Secondary formulation

The continued monitoring of X's challenging behaviour sug-

gested that there was a change in its character at the time

when her SIB became much more frequent and severe.

Therefore, it was suggested that she might be suffering

from problems in addition to her autism, severe LD and

associated communication disabilities. It was noted that

some of her behaviours (e.g. spontaneous crying, and dis-

turbed sleep and eating patterns) were similar to those asso-

ciated with depression. The DSM-IV (APA 1994) requires

two or more weeks during which a person shows at least

four of the following in order to diagnose depression:

1 a change in sleep (X was sleeping very little);

2 a change in appetite or weight (X refused food and was

losing weight);

3 a change in psychomotor activity (X spent much of her

time lying on her bed);

4 a reduction in energy; tiredness or fatigue (it was not pos-

sible to tell if X was experiencing this because of her com-

munication dif®culties; however, she was spending

extended periods of time resting on her bed);

5 feelings of worthlessness or guilt (it was not possible to

tell if X was experiencing these symptoms);

6 dif®culty in thinking, concentrating or decision making

(it was not possible to tell if X was experiencing these

symptoms); and

7 recurrent thoughts of death and suicidal ideation (it was

not possible to tell if X was experiencing these symptoms).

Although X was undoubtedly suffering from weight loss,

poor appetite and disturbed sleep, it was not possible to

know if she was experiencing decreased energy, tiredness,

fatigue, feelings of worthlessness or guilt, dif®culty concen-

trating, or suicidal ideation because of her dif®culties in

communication and the possibility of diagnostic over sha-

dowing (i.e. attributing the symptom to X's LD rather than

to changes in her mood; Matson 1983). Similarly, it was not

possible to assess obsessive rumination, an increase in anxi-

ety and phobias, worries about health, panic attacks, and

problems in relationships. Although X was evidently more

Figure 1 Frequency of challenging behaviours observed in the subject from August 1997 to March 1998: (a) Psychological intervention 1 introduced 1

September; (b) Psychological intervention 1 introduced 10 October; (c) morning dose of Thioridazine (25 mg) introduced 11 October (Evening dose 25 mg in

place from 6 June 1997); (d) Thioridazine (25 mg) bd discontinued 23 October; (e) paroxetine (20 mg) introduced 23 October; (f) Zopiclone 7�5 mg

introduced 28 October; (g) Psychological intervention 2 introduced 1 November; (h) Day service begun 25 January; (i) Zopiclone discontinued 3 February.



tearful and appeared to be more irritable than she had been

on admission, it was decided not to rely on the DSM-IV cri-

teria of depression in isolation and without modi®cation.

However, Edelstein & Glenwick (1997) reported that the

level of a person's LD can affect the presentation of depres-

sion and X's autism would serve to further complicate this.

Meins (1995) summarized the atypical symptoms of depres-

sion in adults with LD. Sovner & Hurley (1983) also sug-

gested that one has to rely upon changes in behaviour and

functioning, and a family history of affective disorders in

order to accurately diagnose depression in people with

more severe LD.

In order to make a differential diagnosis, substance mis-

use and dementia were both eliminated. Furthermore, X

had not suffered from any recent bereavements. There was

no evidence of schizo-affective disorder.

Table 3 shows the observations made of X's behaviour

which were consistent with the factors associated with the

atypical expression of depression in people with LD.

The multidisciplinary team hypothesized that it was

likely that X was suffering from a depressive illness, that

she could have been suffering from depression on admis-

sion and that this had become worse over time.

Secondary treatment

It was decided to treat X for depressive illness. She started

a course of Paroxetine at the end of October 1997. A second,

revised psychological intervention was introduced (Wil-

liams 1992). Staff began, with the support of the Clinical

Psychology Department, to encourage X to take part in

activities more assertively, and she was especially encour-

aged to go for short walks to post letters and visit the local

shops. Routine schedules were planned to encourage X to

join in with group activities and help with the housework,

and staff were asked to provide as much positive feedback

as possible for X while she was engaged in any activity. She

continued to receive one-to-one support in order to facilitate

her participation in more activities. Her parents were

encouraged to visit her on a regular basis and she was able

to visit the family home with close staff support. The Clini-

cal Psychology Department closely monitored all aspects of

X's challenging behaviour. As soon as she was well enough,

X was introduced to a specialist day centre for people with

LD and challenging behaviour. This took place in February

1998.

Outcome following treatment

Incidents of SIB dropped from a total of 115 incidents in

October 1997 to a total of 43 in November 1997 (see Table

2). Indeed, the baseline frequency of SIB (August 1997, 25

incidents) was surpassed as X showed a frequency of 12

incidents in December 1997 and 16 in January 1998 (see

Table 2). She became more interested in activities, began eat-

ing and drinking more, and sleeping better. Interestingly,

there was a slight peak in SIB in February 1998. This may

have been related to changes in X's daily routine following

the introduction to a specialist day service (25 January

1998). Levels of SIB dropped again after several weeks of

attendance (March 1998, 17 incidents; April 1998, 7 inci-

dents). Figure 1 shows the changes in X's behaviours.

X's aggression towards others began to rise in December

1997 (it had reached the lowest level in November 1997).

Her aggression towards others was hypothesized to be less

related to her depressive illness and separate psychological

intervention strategies were designed to address this pro-

blem.

Table 3 Observations made of the subject consistent with atypical expression of depression (Meins 1995; Edelstein & Glenwick 1997)

Atypical feature Observations made of subject

First-degree relative with a diagnosis of affective disorder Mother suffered from depression

Previous episodes of depression Unknown

Recent psychological stressor Left school and moved to residential placement in June 1997

Predominantly sad facial expression and ¯at affect Staff noted that she rarely smiled, and anecdotally reported that she looked sad much

of the time

Overactive behaviour; increase in stereotypic behaviour Foot stamping and rocking both increased in frequency during early October 1997

Self-injurious behaviour Frequency increased signi®cantly (see Fig. 1)

Aggression towards people and objects Withdrawal meant that she was not in contact with other people; high levels of self-injurious

behaviour often meant that she was too `preoccupied' to become aggressive to others

Screaming She began screaming for extended periods of time in October 1997

Loss of developmental skills Episodes of incontinence increased in October 1997, and as withdrawal increased, she showed

little interest in bathing, washing or dressing

Vomiting Not observed

Hallucinations No evidence of this was reported

Spontaneous crying Spontaneous crying was noted to increase in frequency in early October 1997

106 K. Long et al.


Current situation

Combined psychological intervention and treatment with

Paroxetine continues. X is increasingly involved in activities,

and continues to attend a specialist assessment and treat-

ment day service for clients with challenging behaviour. X

still presents a range of challenging behaviours, including

SIB, but these are less intense and less frequent.

Multidisciplinary team members continue to be fully

involved in the assessment and treatment of X in terms of

facilitating her use of the day service, and consolidating an

understanding of her and her behaviour prior to identifying

possible future long-term residential and day placements.

Discussion

The team's work with client X highlights the practical dif®-

culties clinicians face when trying to make a differential

diagnosis of depression in people with LD, particularly

those with complex needs. The expression of depression in

people with severe communication dif®culties, autism and

LD has not yet been comprehensively investigated, and

diagnostic overshadowing may mean that disorders like

depression are not recognized rapidly and accurately.

Because it is likely that people with LD and autism are

particularly vulnerable to depression (Abramson et al.

1992), improving the ability to diagnose depression in this

client group should be a priority for clinicians. An approach

including monitoring of `unusual' behaviours (i.e. beha-

viours which are not usually observed in the individual),

symptoms highlighted in the DSM-IV, atypical symptoms

(Meins 1995; Edelstein & Glenwick 1997) together with the

completion of standardized assessment schedules and a

mental state examination would facilitate a more reliable

diagnosis of depression in people with LD.

The levels of SIB observed in X during her period of

intensely challenging behaviour had a severe impact on the

opportunities available to her in terms of community access

and participation in activities. She was also at considerable

risk of injuring herself. In retrospect, it may appear that X

was displaying obvious signs of a major depressive illness,

but at the time, other possibilities seemed equally likely.

Dif®culties in differential diagnosis were compounded

because X was not able to communicate verbally how she

was feeling.

The present authors are aware that the implications of

this research are somewhat limited because of its retrospec-

tive nature and single case study design. It was not possible

for ethical reasons to test out the depression hypothesis by

withdrawing treatments at a later stage. Similarly, data

relating to the frequency of behaviours associated with the

atypical expression of depression (e.g. screaming and with-

drawal) were not recorded at the time. Such behaviours

were noted anecdotally by X's key workers to have

increased in frequency as the SIB increased. In hindsight, it

would have been invaluable to have recorded these beha-

viours more systematically. As a single case study, the pre-

sent paper aimed to describe atypical signs of depression in

a person with LD and autism, and the practical treatment

provided based on this diagnosis.

Future research should be directed towards an evaluation

of formal approaches to the assessment of depression in

people with LD and those with the additional handicap of

autism with the ultimate goal of producing standardized

tests which may be used with people with more severe LD,

autism and communication dif®culties. This would

undoubtedly lead to an improvement in quality of life for

people with similar needs to X.

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Presentation, assessment and treatment of depression in a young woman with learning disability and autism