developing an autism assessment service ii: analysis of the first 81 cases seen

Original Article : An Autism Assessment Service II

Developing an Autism

Assessment Service II: Analysis

of the First 81 Cases Seen

Vanessa Moore, Josie Titcomb, Chris Johnson,Elaine Cronk, Sue Baker, Laura Thysson, & Chris Rolles

This paper presents an analysis of the first 81 cases seen in the recently

established assessment service for children with autism and related

disorders in Southampton. The children presenting for assessment are

described in terms of a number of biographical, educational, behavioural,

and medical features and the characteristics of our sample are compared

with published findings. The future development of the service is

considered in the light of current developments and common features and

concerns of the families seen.

Keywords: Service development; autism; assessment

Introduction

The evolution of the assessment service in Southampton

and the assessment procedure are described in an earlier

paper in this issue (Moore et al., 1998). In this paper, a

detailed analysis of the first 81 cases seen is presented.

Since Kanner’s (1943) first description of ‘early infantile

autism’, a large and confusing variety of diagnostic criteria

have emerged. In current practice, the two internationally

accepted diagnostic systems of the World Health Or-

ganisation (1993) (International classification of diseases—

currently ICD-10) and the American Psychiatric Associ-

ation (1994) (Diagnostic and statistical manual—currently

DSM-IV) are widely used to classify autistic children. In

keeping with this practice our service employs ICD-10

criteria, which relate directly to our use of the ADI

(Autism Diagnostic Interview; Le Couteur et al., 1989)

described in the earlier paper. The characteristics of our

sample will first be described and their relationship to

published literature then discussed.

Description of referrals to the Southampton

assessment service

Table 1 gives a breakdown of the first 81 cases seen,

according to age and diagnosis. It can be seen that over

two thirds of the children assessed were diagnosed as

autistic and that the majority of referrals (78%) were of

children under the age of 8 years ; 85% of the autistic

children and 77% of the nonautistic children were boys.

Within the autistic group were seven children diagnosed as

having Asperger’s Syndrome. These children ranged in

age from 6 to 17 years.

Sixteen of the 26 children not diagnosed as autistic (62%)

showed behaviours characteristic of autism. In all cases

the onset of difficulties was before the age of 3 years and in

six cases the behavioural features were sufficient to

warrant a diagnosis of atypical autism. The remaining 10

cases were characterised by a receptive language disorder,

usually accompanied by behaviour problems. A further

Table 1. Age and diagnosis of first 81 cases seen

Age

Preschool(2–4 years)

NonautisticAutistic

21 (38%)

First School(5–7 years)

Middle School(8–12 years

Senior School(12+years)

Total(Range: 2yrs 9m–17yrs 9m)

23 (42%)

6 (11%)

5 (9%)

55

10 (38%)

9 (35%)

4 (15%)

3 (12%)

26

Vanessa Moore

Consultant Clinical

Psychologist,

Josie Titcomb

Consultant Child

Psychiatrist,

Chris Johnson

Consultant Clinical

Psychologist,

Elaine Cronk

Director of Education

Services,

Sue Baker

Teacher,

Laura Thysson

Assistant Psychologist,

&

Chris Rolles

Consultant

Paediatrician,

Paediatric Medical Unit,

G Level, Southampton

General Hospital,

Tremona Road,

Southampton

SO16 6YD

Child Psychology & Psychiatry Review Volume 3, No. 3, 1998 121


Table 2. Level of intellectual functioningof autistic and nonautistic children

Intellectual level

Normal (IQ 70+)

42%

Mild learningdisability (IQ 50–70)

Moderatelearning disability (IQ 35–49)

Severe/profoundlearning disability (IQ<35)a

Autisticb

(N = 52)Nonautistic

(N = 22)

a The severe and profound categories are combinedas a result of the practical difficulties of accuratediscrimination at this level of functioning.b The missing data apply to cases where accurateassessment was impossible.

29%

12%

17%

50%

14%

9%

27%

eight nonautistic children (31%) were found to have a

learning disability but were not thought to be autistic. Of

the remaining children, one was considered to have normal

development and one had a conduct disorder.

Whilst the proportion of children diagnosed as autistic

versus nonautistic was found to be fairly constant across

the age range, a greater number of younger nonautistic

children showed a combination of language delay and

behaviour problems, whereas more of the older non-

autistic children showed a generalised learning disability.

The level of intellectual functioning (as measured by the

use of appropriate nonverbal test materials) of children in

the autistic and nonautistic groups is shown in Table 2. It

is worth noting the relatively high proportion of autistic

children within the normal range of intelligence, as well as

the finding that over a quarter of the nonautistic children

had a severe learning disability. Table 3 shows the

percentage of autistic and nonautistic children at each

level of intellectual functioning in whom spoken language

was absent. As expected, the proportion of children in

each group without speech increased with increasing

severity of learning disability. However, more children in

the autistic group had no speech at the higher ability

levels.Unfortunately, since therewas no SALT in the team

for the earlier assessments, it is not possible to present

formal data on expressive language and communication

skills. However, informal assessment indicated that the

quality of spoken language and communication skills

differentiated the children in the two groups, in that the

autistic children were more likely to show disordered

Intellectual level

Normal intelligence 9%

Mild learning disability

Moderate learningdisability

Severe/profoundlearning disability

Autisticb

(N = 52)Nonautistic

(N = 22)

7%

17%

89%

0%

0%

0%

75%

Table 3. Percentage of autistic and nonautisticchildren showing an absence ofspoke language at each level ofnonverbal intelligence

language development and abnormalities of nonverbal

communication (see also Fig. 1).

In terms of receptive language, all children in both groups

showed delayed verbal comprehension (assessed on the

basis of the SALT’s judgement or, if formal testing was

possible, a test score at least two standard deviations

below the mean), except those within the normal range of

intelligence, where 36% of autistic children and 20% of

nonautistic children had verbal comprehension within

normal limits for their age. All seven of the children with

Asperger’s Syndrome were included in the autistic group

with normal verbal comprehension.

The percentage of autistic and nonautistic children show-

ing various autistic features is given in Fig. 1. It can be

seen, not surprisingly, that the presence of all autistic

features was very much more common in the autistic

group, although a considerable number of children

eventually diagnosed as nonautistic also showed each

feature. A similar proportion of children were found to be

clumsy (defined as a deficit in gross and fine motor skills

sufficiently severe to warrant referral to physiotherapy}occupational therapy) in each group (24% of autistic

children and 19% of nonautistic children).

Finally, a similar and high proportion in each group (60%

of autistic children and 62% of nonautistic children) were

found to have significant behaviour problems. Families in

both groups reported aggressive}destructive behaviour or

temper tantrums most frequently, followed by overactive

behaviour and sleep problems. Anxious behaviour and

mood swings were mentioned only by families in the

nonautistic group, whereas lack of a sense of danger,

smearing, self-injurious behaviour, fussy eating, and

screaming were mentioned only by families of autistic

children.

Figure 2 shows the percentage of autistic and nonautistic

children who had medical and}or neurological problems.

Child Psychology & Psychiatry Review Volume 3, No. 3, 1998122


100

80

60

40

20

0Deviantspeech

Abnormalnonverbal

communication

Abnormalsocial

behaviour

Repetitivebehaviour

Abnormaladaptationto change

Stereotypies Absent/limitedsymbolic play

Abnormalpre-

occupations

Autistic

Nonautistic

Figure 1. Percentage of autistic and nonautistic children showing various autistic features

% o

f ch

ildre

n

Autistic

Nonautistic

50

40

30

20

10

0

% o

f ch

ildre

n

Problems inpregnancy

Labourproblems

Perinatalproblems

Epilepsy AbnormalEEG

Chromosomeabnormality

Othermedical

problems

Figure 2. Percentage of autistic and nonautistic children with medical and/or neurological problems

It can be seen that a quarter to a third of the mothers of

autistic children had problems during pregnancy and}or

labour and}or the child had problems in the perinatal

period, as well as a variety of other medical problems.

These included squint, hearing difficulties, hemiplegia,

cystinuria, and food allergies. Other medical problems

tended to be more common in the nonautistic group and

included polydactyly, delayed visual maturation, hydro-

nephritis, ureteric obstruction, cleft lip, growth hormone

deficiency, and hydrocephalus.

None of the children in the autistic group had any



Epilepsy

Abnormal EEG

Other medical/neurologicalproblems

60

50

40

30

20

10

0

% o

f ch

ildre

n

Normal Intelligence Mild LearningDisability

Moderate/severeLearning Disability

Figure 3. Association between intellectual level and medical/neurological problems in autistic group

chromosome abnormality, including Fragile X, whereas

chromosome abnormalities were found amongst 12% of

children in the nonautistic group, mainly translocations of

unknown significance, with no cases of Fragile X. In the

group of children seen since this analysis, one has been

found to have a chromosomal complement of 47, XXY

(Klinefelter’s Syndrome). He was not autistic, but had

some social relationship and early language difficulties.

Table 2 indicates that 58% of the children in our autistic

sample showed varying degrees of learning disability. The

data were re-examined in order to ascertain whether the

degree of learning disability differentiated between autistic

individuals in terms of other characteristics. It was found

that a higher proportion of autistic children with moderate

or severe learning difficulties had epilepsy (20%) and}or

an abnormal EEG (27%) than autistic children with mild

learning difficulties (6% and 19% respectively) or of

normal intelligence (0% and 14% respectively). Children

with moderate or severe learning difficulties were also

more likely to have other medical problems (53%, cf.

30% of autistic children with mild learning difficulties and

20% of those with normal intelligence). The relevant data

is shown in Fig. 3.

Both speech and symbolic play were much more likely to

be absent or severely limited amongst autistic children

who had moderate or severe learning difficulties. Amongst

the other features considered, repetitive use of objects was

more likely to be found amongst autistic children with

learning disabilities (LD) (93% moderate}severe LD;

93% mild LD; 45% normal intelligence), as were stereo-

typies (87% moderate}severe LD; 69% mild LD; 52%

normal intelligence). On the other hand, abnormal pre-

occupations and circumscribed interests were found far

less frequently amongst autistic children with moderate or

severe learning difficulties (7% moderate}severe LD;

55% mild LD; 58% normal intelligence).

Over half of the autistic children and two thirds of the

nonautistic children gave a family history of significant

medical}psychiatric problems or learning disability in

first- or second-degree relatives. Families in both groups

often reported more than one problem. The type of

problems reported may be divided into psychiatric (e.g.

depression, schizophrenia), developmental}learning dis-

ability (including developmental delay, language delay}disorder, dyslexia), medical}neurological problems (in-

cluding epilepsy, Alzheimer’s disease, spina bifida, cleft

lip, multiple sclerosis) and autistic spectrum disorders

(autism}Asperger’s Syndrome). The percentage of

problems of each type reported in the family histories of

children in the autistic and nonautistic groups is shown in

Fig. 4. It can be seen that, whereas a third of families in

each group with a significant family history reported

developmental}learning difficulties, there was a tendency

for more families in the autistic group to give a history of

psychiatric problems, particularly affective disorder, and

more families in the nonautistic group to give a history of

medical}neurological problems.

Two families in the autistic group and one in the



Autistic

Nonautistic

60

50

40

30

20

10

0

% o

f re

spo

nd

ents

Psychiatric Developmental/learningdisability

Medical/neurological

Autism/Aspergersyndrome

Figure 4. Percentage of respondents in autistic and nonautistic groups giving family history ofdifferent types of problem

nonautistic group gave a history of an autistic spectrum

disorder in a close relative. In addition, four families were

seen in which more than one family member were assessed.

In three cases, these were sibling pairs ; in the fourth, a

sibling and a cousin.

The most common referral route to our service was found

to be via a hospital paediatrician or a community

paediatrician. A further 45% of referrals came from GPs

and these included cases identified by other nonmedical

personnel (e.g. health visitor, clinical}educational psy-

chologist) who recommended referral, which must be via

a medical route.

Nearly three quarters of the children referred were already

in special educational provision at the time of their

assessment. The vast majority were in schools for children

with moderate or severe learning disabilities or specialist

preschool provision and there was no difference between

children eventually diagnosed as autistic or nonautistic in

distribution across the various types of provision. Only

four children (7%) in the autistic sample were attending

an educational placement specifically designated for

autistic children at the time of their assessment.

Discussion

It is perhaps not surprising that over two thirds of the

children referred to our service were diagnosed as autistic,

given that all the referrals had already had a diagnosis of

autism considered. This is consistent with the finding of

Gillberg et al. (1990) that 75% of children referred with

suspected autism before the age of 3 years had the

diagnosis confirmed after that age. The majority of our

referrals were of children below the age of 8 years. This

suggests that service providers need to have particular

expertise in the assessment of children in this younger age

range.

The children diagnosed with Asperger’s Syndrome were

all over the age of 6 years and typically presented with

major difficulties in handling social situations at school.

The 43% considered to be clumsy was higher than the

proportion of other children in the autistic group thought

to be clumsy (21%). This is consistentwith the observation

that Asperger’s children are often clumsy, although this is

not an obligatory feature when making the diagnosis

according to ICD-10 criteria (e.g. Ehlers & Gillberg,

1993).

The majority of children not diagnosed as autistic showed

behavioural features characteristic of autism, explaining

why they were referred and underlying the need for

expertise amongst the assessment team in deciding com-

plex diagnostic issues. The younger children tended to

present with a combination of language delay}disorder



and behaviour problems and often posed significant

management difficulties at home and}or school. A rela-

tively high proportion of older children presented with a

severe learning disability and we suspect that in some of

these cases the parents may have been hoping for a

diagnostic label of autism, believing this to be more

acceptable than a disability of unknown origin. In all cases

thorough assessment was helpful in clarifying the nature

of the child’s difficulties and in providing general pointers

in the direction of behavioural management and likely

educational needs. Feedback from parents indicated that

they also found the assessment helpful (cf. Moore et al.,

1998).

The male}female ratio of 5±9 to 1 amongst the autistic

children in our sample is high but not inconsistent with the

ratio of 5±7 to 1 found by Steffenburg and Gillberg (1986)

for ‘Kanner autism type cases ’. It is known that the

preponderance of males is greater in the case of children

with an IQ in the normal range (cf. Bailey, Phillips, &

Rutter, 1996) and this is consistent with the observation

that a greater proportion of children in our autistic sample

had normal intelligence than the one quarter expected on

the basis of epidemiological studies (Rutter, 1979). This

then appears to represent a referral bias to our service.

Two possible explanations are that some children with a

learning disability and autism already have their needs

catered for by specialist educational provision and}or that

the management difficulties posed by autistic children of

normal intelligence are sufficiently worrying to prompt

referral.

The finding that the quality of spoken language and

communication skills differentiated the autistic and non-

autistic children is consistent with the many studies

highlighting the deviant communication features charac-

teristic of autism (cf. Bailey et al., 1996), and supports our

inclusion of a SALT in our core assessment team. We

believe that the SALT is better able than other pro-

fessionals to provide a detailed analysis of the child’s

semantic, syntactic, and pragmatic language skills as well

as nonverbal communication, and that the quality and

comprehensiveness of our assessments has improved as a

result.

Our finding that other medical conditions, including

chromosome abnormalities, tended to occur less fre-

quently in the autistic group is consistent with the

observations of Rutter et al. (1994) that this association is

less strong than originally proposed, although unfortu-

nately we are not able to provide a detailed categorisation

of conditions on the basis of the data available. However,

our data provide strong support for Rutter et al.’s (1994)

contention that known medical conditions are much more

common when autism is accompanied by severe retar-

dation (cf. Fig. 3). The fact that we found no cases of

Fragile X in the autistic group is probably not of

significance, since recent estimates put the rate of co-

occurrence as low as 2±5% (Bailey et al., 1993; Piven et al.,

1991).

Obstetric complications were reported in up to one third

of our mothers of autistic children. The weight of evidence

suggests that these complications derive from a genetically

abnormal foetus rather than that the complications result

in environmental risk (Bolton et al., 1994; Bailey et al.,

1996). This is a point that can sometimes be usefully

explored with parents in the feedback session, since several

mothers have longstanding concerns about the possible

effects of difficulties during pregnancy on the subsequent

development of their child.

Our finding that there was an increased incidence of

affective disorder amongst the families of autistic children

has been reported in several other studies (Bolton et al.,

1995; DeLong, 1994; Piven et al., 1990; Smalley,

McCracken, & Tanguay, 1995). As yet it is not clear

whether this association is genetically mediated, or

whether it might be a reflection of the stresses associated

with rearing an autistic child (Bailey et al., 1996).

The fact that we found evidence of autism and}or autistic-

like conditions occurring amongst the close relatives of

children in our autistic group is consistentwith the findings

of many studies (summarised in Bailey et al., 1996) that

there is a significantly increased risk of both autism and a

range of similar social and cognitive abnormalities oc-

curring amongst the siblings of autistic children. This is an

important point to bear in mind when counselling parents

on the genetic implications of receiving a diagnosis of

autism for their child.

We believe that the main benefits of providing a diagnostic

service include clarifying the nature of the child’s diffi-

culties and specifying current strengths and weaknesses,

providing information and an opportunity for informed

discussion about genetic implications and prognosis, and

highlighting likely educational needs and strategies for

behaviour management. Since we are an assessment

service we are restricted in the extent to which we can

implement the latter.

A future aim is to forge closer links between our service

and community-based treatment services for local chil-

dren, in particular drawing on the skills of the clinical

psychologist and SALT to implement behavioural pro-

grammes (cf. Clements, 1987; Howlin & Rutter, 1987;

Lovaas, 1987). This is particularly relevant in view of the

large number of children presenting for assessment with

behaviour problems. Good links with the local education

service are also essential and we are fortunate that

TEACCH programmes (Treatment and Education of

Autistic and Related Communication-Handicapped Chil-

dren; Schopler & Reichler, 1979; Schopler, Reichler, &

Lansing, 1980) are being implemented in an increasing

number of schools in Hampshire.

A second aim involves the need to update our assessment

protocol in the light of current developments. A recent

refinement is the inclusion of a range of executive function

tasks in the psychological assessment, following the



suggestion that autistic children may exhibit difficulties in

high-level planning and control of behaviour (e.g. Hughes,

Russell, & Robbins, 1994; Ozonoff, Pennington, &

Rogers, 1991). Finally, we have recently forged stronger

links with our local child development centre and we are

offering assessment to younger preschool children, in view

of the findings that diagnosis is possible earlier than

supposed in the past (e.g. Baron-Cohen, Allen, & Gillberg,

1992; Dahlgren & Gillberg, 1989; Gillberg et al., 1990;

Lord, 1995) and that there are significant advantages to

early intervention (e.g. Greenspan, 1992; Lovaas, 1987).

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developing an autism assessment service ii: analysis of the first 81 cases seen

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