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Journal of Child Psychology and Psychiatry 48:11 (2007), pp 1102–1110 doi:10.1111/j.1469-7610.2007.01774.

Autism in adults: symptom patterns and early


childhood predictors. Use of the DISCO in
a community sample followed from childhood
Eva Billstedt,1 I. Carina Gillberg,1 and Christopher Gillberg1,2
1
Institute of Neuroscience and Physiology, Göteborg University, Sweden; 2University of Strathclyde, Glasgow, and
NCYPE, Lingfield, UK

Background: Few studies have looked at the very long-term outcome of individuals with autism who
were diagnosed in childhood. Methods: A longitudinal, prospective, community-based follow-up study
of adults who had received the diagnosis of autism (classic and atypical) in childhood (n ¼ 105) was
conducted. A structured interview (the Diagnostic Interview for Social and COmmunication disorders –
the DISCO) was used in order to evaluate symptoms and symptom patterns 13–22 years after original
diagnosis. Childhood measures, including IQ-level at time of childhood diagnosis and communicative
speech registered before age 5 years, were studied in relation to the presence of autism symptoms at
follow-up. Results: The classical and atypical autism groups were fairly homogeneously impaired in
terms of symptoms in the social interaction category whereas other common childhood autism symp-
toms, including maladaptive and stereotyped behaviours, were more variable in the study group at
follow-up. Odd responses to sensory stimuli were still extremely common. Speech before 5 years of age,
IQ, gender, diagnosed medical disorder and onset of epilepsy before 5 years were variables that corre-
lated to outcome on the DISCO algorithm for autistic spectrum disorders (Wing & Gould, 1979) con-
cerning style and quality of social interaction, communication style and pattern of self-chosen
activities. Conclusions: Social interaction problems were still present in the vast majority of adults
with autism/atypical autism, but behavioural impairments were much more variable in adulthood.
Almost all cases were reported to show persistent perceptual problems. Certain childhood measures
were found to prospectively predict adult social interaction style, communication type, and pattern of
self-chosen activities, which still met diagnostic criteria for autism/atypical autism in adult-
hood. Keywords: Autism, the DISCO, community sample, adult outcome. Abbreviation: DISCO:
Diagnostic Interview for Social and COmmunication disorders.

Classic and severe cases of autism usually persist Seltzer stated that symptoms of autism appear to be
into adulthood, and the majority of cases diagnosed different at different stages of life (Seltzer et al.,
in childhood continue to meet criteria for the dis- 2003).
order in early adult life (Lotter, 1978; Nordin & Autism in childhood has been well described.
Gillberg, 1998; Howlin, Goode, Hutton, & Rutter, However, symptoms typical of the infant and pre-
2004; Billstedt, Gillberg, & Gillberg, 2005). Indi- school child with autism may have taken on different
viduals affected continue to show impairments in qualities or may no longer be evident at all in the
the typical autism triad domains of reciprocal social young adult person with autism.
interaction, reciprocal communication, and restric- We have conducted a follow-up study into early
ted behaviour patterns in adulthood (Howlin, 2003). adulthood of 120 individuals diagnosed with autism
In a telephone survey Ballaban-Gil, Rapin, Tuch- in childhood (recruited from three population stud-
man, and Shinnar (1996) found high rates of ies). There was considerable stability over time as
behaviour problems among 45 adults who had been regards the diagnosis of autism per se (Billstedt
given a diagnosis of autism in childhood. McGovern et al., 2005). The present paper looks at distinctive
and Sigman (2005) followed 48 individuals dia- symptoms and symptom patterns within the broader
gnosed with autism in childhood to adolescence. All autism spectrum in this population-based cohort.
but two still met criteria for autism. In contrast to The main source of information was a semi-struc-
the continuity in diagnosis, parents described tured interview with an informant who knew the
improvements in social interaction, repetitive/ person with autism well at age 16–40 years. The
stereotyped behaviours, adaptive behaviours and interview used was the Diagnostic Interview for So-
emotional responsiveness to others in adolescence cial and COmmunication disorders (DISCO) (Wing,
compared to middle childhood. This improvement Leekam, Libby, Gould, & Larcombe, 2002), which
was more evident in high-functioning adolescents was chosen because it is particularly effective for
with autism than in low-functioning individuals. diagnosing disorders within the broader ‘autism
spectrum’ (Leekam, Libby, Wing, Gould, & Taylor,
Conflict of interest statement: No conflicts declared. 2002) and because it yields more information about
Ó 2007 The Authors
Journal compilation Ó 2007 Association for Child and Adolescent Mental Health.
Published by Blackwell Publishing, 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA
Autism in adults: symptom patterns and early childhood predictors 1103

non-autism problems than most other instruments medical assessment. The third author (C.G.) had
currently in use. examined all cases in childhood and was aware of their
The aim of the study is to present a descriptive childhood diagnosis but did not take part in the
picture of the most common symptoms in adults assessment in the follow-up study.
with autism as measured by the DISCO, to find out
to what extent the DISCO-algorithm and clinical Participants
diagnosis correlate, and to find out whether or not
certain childhood measures, derived from the ori- One hundred and five individuals (75 males, 30
ginal studies, were associated with specific symp- females) with childhood diagnoses of autistic disorder/
toms within the autism spectrum in adult age. infantile autism (56 males, 15 females) or autistic-like
conditions/atypical autism (19 males, 15 females) were
included in this follow-up study. At follow-up, 89 of the
105 participants were clinically diagnosed as having
Method autistic disorder. Fifteen individuals were diagnosed as
having atypical autism and one individual did not meet
The original studies
criteria for an ASD.
Our study group, born in 1962–84, was recruited from
three population-based studies from Sweden of indi-
viduals diagnosed with autism in early childhood (Gill- Intellectual functioning
berg, 1984; Steffenburg & Gillberg 1986; Gillberg, All participants had undergone testing before 10 years
Steffenburg, & Schaumann, 1991). All 120 individuals of age. Only one-fourth of all individuals included were
(84 males, 36 females) were followed up in late adoles- able to take a complete IQ-test (Wechsler, 1981, 1992)
cence–adult life (Billstedt et al., 2005). The original at follow-up. However, all participants were assessed
studies of young children comprised participants with using the Vineland Adaptive Behavior Scales (VABS;
DSM-III-R (APA, 1987) autistic disorder/infantile aut- Sparrow, Balla, & Cicchetti, 1984) allowing a reason-
ism (61 males, 17 females) and 42 with atypical aut- able estimate of whether or not an individual should be
ism/autistic-like condition (23 males, 19 females). The diagnosed as belonging in the severe learning disability
group with atypical autism/autistic-like conditions had (SLD) category (see Billstedt et al., 2005). In the autism
met 6 or more of the 16 – but not full – DSM-III-R group, SLD was diagnosed in 50 cases (70%), mild
criteria for autistic disorder. learning disability (MLD) in 17 cases (24%), near-aver-
age intelligence (NA) in 2 cases (3%) and average (A)
intelligence in 2 cases (3%). In the atypical group, SLD
The follow-up study
was diagnosed in 26 cases (76%), MLD in 7 cases (21%)
The individuals were followed prospectively for a period and A in 1 case (3%).
of 13–22 years (mean age 17.8 years, 3.6 SD) and re-
evaluated at ages 17–40 years (mean age 25.5 years,
6.4 SD). Six families declined participation in the fol- The DISCO
low-up study and six individuals had died at the time of
The DISCO is a 2–4-hour standardised interview
follow-up (Billstedt et al., 2005). Three of the remaining
intended for interviewing a person who has known the
108 individuals were included in the follow-up study,
individual with suspected autism spectrum disorder
but did not participate in the current DISCO-study.
from early childhood. The purpose of using it is to assist
clinicians in the diagnostic work-up and care of persons
with autism spectrum and other developmental dis-
Clinical diagnoses at follow-up
orders affecting social interaction and communication
At follow-up, individuals who met criteria from at least (Wing et al., 2002). Its algorithm enables one to
two of the three domains of the triad of social, com- investigate whether the necessary criteria of different
munication and imagination/behavioural impairments diagnostic systems are met. The diagnostic systems
received autism spectrum disorder (ASD) diagnoses that are used are ICD-10 (WHO, 1993), DSM-III-R (APA,
after clinical assessment. ASD cases were then subdiv- 1987) and DSM-IV (APA, 1994). Algorithms based on
ided into three groups: (1) those with autistic disorder/ Kanner’s ‘Early Infantile Autism’ (Kanner & Eisenberg,
childhood autism who met criteria for this diagnosis 1956), Gillberg and Gillberg’s definition of Asperger
according to the DSM-IV (APA, 1994)/ICD-10 (WHO, Syndrome (1989), Wing & Gould’s ‘Autistic Spectrum
1993), (2) those with atypical autism according to the Disorder’ (ASD; 1979), and ‘Social Impairment’ (1979)
ICD-10 in cases showing 4 or more of the 12, but not are defined and used.
full DSM-IV/ICD-10 diagnostic criteria for autistic dis- From the DISCO one obtains an ‘ever’ diagnosis,
order/childhood autism, and (3) those with other ASD which is retrospective, as well as a ‘current’ diagnosis
not meeting criteria for autistic disorder or atypical (‘ever’ includes ‘current’). During the DISCO interview,
autism. In addition, the diagnostic criteria for Asperger responses to more than 300 questions are coded for
syndrome by the Gillbergs (Gillberg & Gillberg, 1989) computer entry. The questions are divided into three
were also checked. Clinical diagnoses were made con- groups pertaining to: (i) current level of function, (ii)
jointly by the first (E.B.) and second (I.C.G.) authors of delay in acquiring relevant skills, and (iii) untypical
this paper, who were blind to the original specific behaviours associated with the relevant skills. In this
childhood diagnosis and symptomatology, based on all paper the ‘current’ responses on untypical behaviour
available information from psychiatric-psychological- are presented. A few items were not relevant to a larger
Ó 2007 The Authors
Journal compilation Ó 2007 Association for Child and Adolescent Mental Health.
1104 Eva Billstedt, I. Carina Gillberg, and Christopher Gillberg

part of the group and were therefore not included in this and (7) immigrant parents (at least one parent born in
study. Included were 22 social interaction items, 17 foreign country).
communication items, 28 routines/stereotyped beha-
viour items, 20 sensory items, 26 emotional problem/
maladaptive behaviour items, and 19 items concerning Statistics
self-care, motor skills and activity. Problems were rated Spearman’s correlation was used to investigate the
as ‘marked’, ‘minor’ or ‘no problems’. relationship between DISCO items and symptoms. We
then used stepwise regression techniques to evaluate
the relative contribution of each background factor to
Other scales/measures used outcome in terms of specific DISCO ASD algorithm
The DSM-III-R Global Assessment of Functioning scale symptoms. We used stepwise regression in the SPSS
(GAF; American Psychiatric Association, 1987), Lotter’s statistical package, where 6 predictors were entered
criteria (1978) for the classification of outcome and a consecutively to maximise each of the 3 autistic spec-
psychiatric-medical assessment were also included. trum algorithm items. Probability level for entry or
The results from these measures have been reported exclusion was .05.
elsewhere (Billstedt et al., 2005).
Ethics
Procedure The study was approved by the Medical Ethical
The DISCO interviewees were parents or other close Committee of Göteborg University.
family members (grandparents, siblings or foster-par-
ents) in 91 cases. In the remaining 14 cases the inter-
viewees were professional caregivers (i.e., teachers, staff Results
in day-centre activities or group homes). The interviews
were conducted either in an outpatient clinic, in the DISCO-10 diagnoses in the study group at follow-up
home of the individual with ASD or in the home of the Eighty-two of 89 (92%) in the adult clinical autistic
interviewee.
disorder group and 3 of 15 individuals (20%) in the
adult clinical atypical autism group met DISCO-
Study of adult symptoms and their links to certain algorithm criteria for autistic disorder. Seven indi-
childhood measures viduals in the adult clinical autistic disorder group
(8%) and 12 individuals (80%) in the adult clinical
For the study of possible associations between some atypical autism group met the DISCO-algorithm
specific ASD symptoms and certain childhood meas-
criteria for atypical autism. In the autistic disorder
ures, the following approach was used. The algorithm
group, 15 (17%) met also Kanner’s criteria for early
for Wing and Gould’s ASD is based on 7 items. All these
items are investigator-based ratings taking into account infantile autism according to the DISCO, and an-
all the information obtained from the whole DISCO other 13 individuals (17%) met Gillberg and Gill-
interview. One concerns the current quality of social berg’s criteria for Asperger syndrome (1989). In the
interaction (aloof, passive, active but odd, over-formal, atypical autism group, 1 man (7%) met the criteria
shy, electively mute, chatty/friendly (typical of Williams for Asperger syndrome according to Gillberg and
syndrome) or appropriate). A second item concerns the Gillberg (1989) and none in this group met Kanner’s
individual’s style of communication (communicating criteria for early infantile autism. All individuals met
only needs, one-sided and repetitive, or truly recipro- criteria for Wing and Gould’s definition for Social
cal). A third item concerns the current overall pattern of Impairment and ASD.
activities (narrow and repetitive or varied and flexible).
The remaining 4 items are related to imagination and
pretence. Many parents/caregivers were able to provide Specific symptoms
only partial information for these 4 items, and they were
therefore not included in the study of childhood meas- Given that, at the symptom level, there were few
ures. Thus, only the three first (social, communication differences across clinical diagnostic groups, the
and pattern of activities) items of the DISCO ASD autistic disorder and atypical autism groups were
algorithm were correlated to childhood measures in this collapsed and referred to as the ASD group. Table 1
study. The childhood measures (derived from the ori- shows all the untypical social interaction, commu-
ginal studies) were: (1) gender, (2) childhood IQ/DQ- nication and behaviour symptoms that were pre-
level (categorised in SLD, MLD, NA and A categories), (3) sent in half or more of the study group.
presence of some communicative speech before 5 years Percentages are calculated on the basis of results
of age (as noted in childhood records), (4) epilepsy (on-
obtained in 98–105 individuals (missing data in a
set before 5 years of age and onset after 5 years of age
few cases for certain items). A detailed presentation
up until one year before follow-up as evidenced by
recording in childhood files, see Danielsson, Gillberg, of all DISCO symptoms is published in an online-
Billstedt, Gillberg, & Olsson, 2005), (5) medical dis- only Appendix.
orders regardless of presence or not of epilepsy (as
detailed in medical records at the time of early child- Social interaction. Overall rates of abnormal social
hood population studies), (6) childhood ASD diagnosis, behaviour were high. No interaction with age peers or
Ó 2007 The Authors
Journal compilation Ó 2007 Association for Child and Adolescent Mental Health.
Autism in adults: symptom patterns and early childhood predictors 1105

Table 1 The untypical social interaction, communication and behaviour symptoms that were present in half or more of the study
group

DISCO symptoms (n ¼ 98–105) Current% Marked/minor%

Social interaction1
No interaction or inappropriate quality of interaction 92 75/17
One-sided social approaches or no approach at all 90 68/22
No interaction with age peers/interacts only if led by other 90 65/25
No or inappropriate conventions of peer interaction 88 83/5
Lack of or inappropriate emotional response to age peers 84 72/12
No or inappropriate sharing of interest and enjoyment 80 56/24
No adequate giving of comfort to others 79 63/16
Avoidance of age peers 78 44/34
Behaviours indicating no awareness of others’ feelings 77 54/23
No adequate seeking of comfort when in pain/distress 72 59/13
No appropriate response to physical affection 70 20/50
No or inappropriate reaction to others’ happiness 58 37/21
Tends to have a blank, unfocussed gaze 51 24/27
Poor or no eye contact 50 19/31
No adequate response to visitors 50 18/32
Verbal and non-verbal communication2
Little, if any reciprocity in verbal communication 83 47/36
Unable to smile natural on request 74 36/38
Limited or odd facial expression 67 43/24
Abnormal tone of voice 53 29/24
Routines, resistance to change, stereotyped movements and vocalisations/verbalisations3
Maintenance of sameness in routines 62 32/30
Responses to sensory, auditory and visual stimuli4
Unusual reaction to firm touch 60 33/27
Indifference to pain, heat, cold 58 33/25
Acuteness of hearing 53 39/14
Self-injury 51 27/24
Emotional problem and maladaptive behaviour5
Laughs for no reason 67 34/33
Needs constant supervision 59 37/22
Lack of cooperation 59 29/30
No psychological barriers 55 33/22
Temper tantrums 50 16/34
Self-care, motor skills, and activity6
Lack of awareness of suitability of clothing 75 64/11
Poor coordination in PE and games 67 31/36
Immature gait when walking 56 35/21
1
DISCO, part 3, section xii-C, xiii-C, xiv-C; 2DISCO, part 3, section ix, x and xi; 3DISCO, part 4, section i, and v; 4DISCO, part 4
section, ii, iii and iv; 5DISCO, part 5, section I, and part 6, section I; 6DISCO, part 3, section ii-C, iii-C, iv-C, and part 4, section xi.

only interaction if led by other was very common. The in request, a large group was judged to do so in an
quality of the interaction was, when it occurred, unnatural way.
inappropriate, and appropriate conventions were
often missing. Inappropriate (or lack of) emotional Routines, resistance to change and stereotyped
response to age peers was also common. One-sided movements and verbalizations. The only symptom
social approaches or no approach at all was reported in this category seen in over half the sample was the
in a large majority of the group. About 70% in the concern about maintaining the sameness of routines.
group of individuals with ASD disliked, tolerated or
enjoyed, but did not reciprocate physical expressions Responses to sensory, auditory and visual stimuli,
of affection. Poor eye contact was reported in half of and self-injury. A majority of the study group (93%)
the group and half the group tended to have a blank, was reported to have some kind of impairing sensory
unfocussed gaze. abnormality. Various types of aberrant responses to
touch were the most common sensory abnormalities
Verbal and non-verbal communication. The most reported. Sixty-six percent of the study group were
common problem in communication in the ASD reported to have abnormal responses to auditory
group was the lack of reciprocity and odd or limited stimuli, and 45% showed abnormal responses to
non-verbal communication. Facial expression was visual stimuli. Specific abnormal responses that
judged to be inappropriate or unvaried in more than affected more than half of the study group were dis-
half of the study group. Lack of intonation and lack of like of being held firmly (and almost half of all indi-
prosody in speech was often reported. When smiling viduals reacted in unexpected ways to gentle touch),
Ó 2007 The Authors
Journal compilation Ó 2007 Association for Child and Adolescent Mental Health.
1106 Eva Billstedt, I. Carina Gillberg, and Christopher Gillberg

indifference to pain, heat and cold and acuteness of significant predictors of social interaction. The
hearing. Self-injurious behaviours were seen fre- presence of other medical disorders, childhood
quently or occasionally in half of the group. diagnosis (typical/atypical autism) or having immi-
grant parents were not associated with the quality of
Maladaptive behaviour. A majority of the study social interaction in adulthood either in the correla-
group was reported to laugh for no obvious reason. tional or stepwise analyses.
The need for constant supervision and lack of co-
operation was reported being a major problem in
Childhood predictors of adult reciprocal
more than half of the ASD group. Unawareness of
communication
psychological barriers and temper tantrums were
common. The strongest univariate childhood predictors for
outcome as regards the DISCO-ASD-algorithm item
Self-care and motor skills. A large majority of the for reciprocal communication were speech before
study group had only a limited number of activities of 5 years of age and higher childhood IQ. Early-onset
their own choosing, or no interests at all. Lack of epilepsy also correlated (negatively) on this item but
awareness of needing proper clothes according to to a lesser degree. In the stepwise analysis other
weather or social occasion was a common problem. medical disorders emerged as a negative predictor
Poor coordination in Physical Education (PE) and together with speech before 5 years (positively).
games was common as well as a general immature Gender, childhood diagnosis and immigrant parents
gait when walking. were not associated with adult reciprocal communi-
cation.
Childhood predictors of adult quality of social
interaction Childhood predictors of limited adult pattern of
self-chosen activities
Speech before 5 years of age (prospective record
data) and higher childhood IQ showed a strong cor- Speech before 5 years of age and higher childhood
relation with the DISCO-ASD-algorithm item for IQ were the factors that correlated significantly
better quality of social interaction at follow-up with the DISCO-ASD-algorithm item limited pattern
(Table 2). There were also weaker correlations be- of self-chosen activities both according to Spear-
tween early onset epilepsy (onset before 5 years of man’s correlations and stepwise analysis. The
age) and female gender on the one hand and poorer remaining childhood predictors (gender, epilepsy,
quality of social interaction on the other. However, in other medical disorder, childhood diagnosis and
the stepwise regression analysis (Table 3), only immigrant parent) were not associated with this
speech before 5 years, IQ and gender remained as item.

Table 2 Spearman’s correlations of Wing and Gould’s autistic spectrum algorithm items and various predictors

Quality of social Reciprocal Limited pattern of self-chosen


Symptoms interaction (n ¼ 105) communication (n ¼ 105) activities (n ¼ 102)

IQ/DQ .57** .51** .36**


Female gender ).23* ).06 .03
Epilepsy onset <5 years ).20* ).23* ).09
Epilepsy onset >5 years ).08 ).03 ).03
Other medical disorders ).05 ).17 .10
Speech before 5 years .51** .58** .37*
Typical autism ).12 ).14 ).05
Immigrant parents .03 .00 .04

* ¼ <.05, ** ¼ <.01.

Table 3 Childhood factors predicting Wing and Gould’s autistic spectrum algorithm items

Social interaction B p-value R-square ¼ .45


IQ/DQ .82 .001
Gender ).74 .003
Speech before 5 years .83 .003
Reciprocal communication B p–value R-square ¼ .39
Speech before 5 years 1.06 .001
Other medical disorders ).42 .008
Limited pattern of self-chosen activities B p–value R-square ¼ .43
IQ/DQ .27 .03
Speech before 5 years .40 .04

Ó 2007 The Authors


Journal compilation Ó 2007 Association for Child and Adolescent Mental Health.
Autism in adults: symptom patterns and early childhood predictors 1107

Discussion responses to sensory stimuli in adulthood has also


recently been reported by Wing and her group
Symptoms and symptom patterns
(Leekam, Nieto, Libby, Wing, & Gould, 2006).
All the participants in this follow-up study in late Fifth, various types of ‘non-core autism’ emotional
adolescence and young adulthood, of a population problems and maladaptive behaviours are often
cohort of individuals diagnosed in early childhood present in young children with autism. The variation
with autism or atypical autism, still showed impair- in occurrence of such symptoms in adulthood was
ment related to their ‘autism features’. Autism/ very considerable, with only a few symptoms in each
atypical autism is diagnosed in individuals, whether category affecting half or more of the study group.
children or adults, who manifest a range of symp- Sixth, one of the most striking findings of the study
toms that can be subgrouped under the categories was the continued severe limitation of self-chosen
currently believed to constitute separate portions of activities, often manifested in only engaging in
the ‘triad of impairments of social interaction, com- repetitive activities. This, and prevalent problems
munication, and imagination/behaviour’ (Wing, reported on several other items of the DISCO-cate-
1988). Almost without fail, the adolescent and young gory ‘self-care, motor skills, and activity’, stresses
adult individuals included in the present study still the complexity of the disabilities subsumed under
met clinical DSM-IV diagnostic criteria for autism (a the label of autism and the need for individualised
large majority) or atypical autism (a minority) at fol- support for adolescent and adult people with autism
low-up, and all adults with a clinical diagnosis of and their families/carers.
autism/atypical autism met DISCO-thresholds for Seltzer and colleagues (2003) described and com-
autism/atypical autism. This means that the vast pared symptoms of autism spectrum manifested in an
majority showed above-threshold symptoms in the adolescent (contemporary diagnostic definitions
three triad domains. However, the detailed analyses used) and an adult cohort (more narrow diagnostic
of symptom patterns performed in the present study criteria used). Data were collected using the Autism
showed that there was a great degree of variability of Diagnostic Interview-Revised (ADI-R; Lord, Rutter, &
symptoms across subjects. LeCouteur, 1994) to assess the pattern of autism
First of all, various types of symptoms in the social symptoms in adolescence and adulthood. As in our
interaction category were still extremely common. study, the majority of the sample continued to mani-
Fifteen of 22 symptoms in this category were repor- fest symptoms of autism that met the diagnostic
ted to still be present in half or more of the study threshold. The adult cohort appeared to be less
group, underscoring the pervasiveness of the social severely impaired than the adolescent cohort in the
reciprocity problems that have been characteristic of manifestation of abnormal behaviour, including ver-
the group from infancy through childhood and bal symptoms and many restricted, repetitive
adolescence into adult life. behaviours. The authors speculated about the pos-
Secondly, in the communication category, only 4 sibility that the developmental course of the abnormal
of the 17 symptoms included in the category affected behaviours of autism is one of abatement of symp-
half or more of the study group. The most prevalent toms from adolescence into adulthood. On the other
current symptom from the communication domain hand, their adolescent cohort appeared to be less
was the limitation of reciprocity in communication impaired than the adult cohort in the manifestation of
(clearly difficult to separate from ‘reciprocity in social prosocial behaviours, such as communication and
interaction’). Several communication impairment social interaction. Our findings partly support (e.g.,
symptoms, including echolalia, typical of young abatement of abnormal symptoms, including verbal
children, were reported to be much less prevalent symptoms and many restricted, repetitive behav-
when these children had grown up. iours), and partly contradict (e.g., generally large
Thirdly, the final category in the triad, the beha- improvements across domains of functioning) the
vioural/imagination domain, comprises a variety of conclusions drawn by Seltzer’s group.
different impairing symptoms such as handicapping
routines, resistance to change, stereotyped move-
Childhood measures
ments and stereotyped vocalisations/verbalisations.
Only one single symptom from this category, main- The two variables that have consistently been iden-
tenance of sameness in routines, was reported to be tified as early predictors of outcome in autism are IQ
present in half or more of the study group at the and language (Lotter, 1974; Gillberg & Steffenburg,
follow-up study. 1987; Nordin & Gillberg, 1998). The present study
Fourth, symptoms not belonging to the triad but confirmed the importance of both these factors, and
very often present in young individuals with autism particularly underscored the salience of speech be-
are unusual responses to sensory (e.g., touch, pain, fore 5 years of age as a most important predictor of
auditory, and visual) stimuli. Such problems were outcome as regards all three of the ‘core’ childhood
still almost pervasively present in adult age. The autism features in adulthood.
finding of an extremely high proportion in the autism Epilepsy, with an onset before 5 years of age,
group still showing impairing problems as regards correlated to outcome in the area of the quality of
Ó 2007 The Authors
Journal compilation Ó 2007 Association for Child and Adolescent Mental Health.
1108 Eva Billstedt, I. Carina Gillberg, and Christopher Gillberg

social interaction (and reciprocal communication). low-functioning subgroups. Examples were odd or
However, in the stepwise procedure, this factor ‘dis- limited facial expressions, none or only a limited
appeared’ and did not account for a significant pro- number of activities of own choice, and in-
portion of the total outcome variance. Instead, in the appropriate behaviours indicating limitations in
stepwise analysis, ‘medical disorder’ (often associ- awareness of the feelings of others. A major finding of
ated with epilepsy) was found to account for a sig- the study was that the study group was more
nificant proportion of the variable in terms of poor homogeneous concerning different symptoms in the
outcome of reciprocal communication in early adult social interaction category, such as no interaction
life. The generally poorer level of intellectual func- or inappropriate quality of interaction and/or one-
tioning as a common denominator for epilepsy and sided social approaches, whereas other typical
medical disorders might hold the key to explaining at autistic symptoms, such as maladaptive and ste-
least part of the ‘predictive’ power of these variables. reotyped behaviours, were much more variable. The
If intellectual functioning was left out of the stepwise fact that sensory problems were almost pervasive in
regression model, the predictive power came down to adulthood raises the important issue as to whether
R2 ¼ .32 (from .45). or not such problems (which were almost universally
Female gender indicated greater abnormalities in present in childhood also) should be considered as
the area of social interaction. Associations between more ‘core’ than other ‘typical’ behaviour problems
gender and reciprocal communication and between for the delineation of the syndrome of autism.
gender and limitation in self-chosen activities were
not found. This could be – at least partly – explained
by Wing’s (1981) theory – further developed by Gill-
Clinical implications
berg (1992) – that girls who qualify for a full dia-
gnosis of autism may have more severe brain It is essential to compile a thorough clinical history
dysfunction than boys at similar level of diagnostic and, to cover childhood development and symptoms
symptoms. The females in the present study more in detail in order to be able to properly assess the
often had epilepsy than did the males (Danielsson meaning of ‘outcome’ for an individual with ASD.
et al., 2005). Those with more severe brain dysfunc- Several typical childhood autistic traits may have
tion in childhood would – obviously – seem to be at disappeared or have become toned down in adult-
higher risk of poor outcome in adult life than would hood, leaving core autism features, such as limited
those with less pronounced brain dysfunction. reciprocity in communication and social interaction
(and possibly aberrant responses to sensory stimuli),
as well as a very restricted range of self-chosen
Methodological considerations and generalisability
activities as the main characteristics. The high rate
of findings
of persistent abnormal responses to sensory stimuli
How generalisable are these findings to other cohorts needs to be taken into account when planning for an
of individuals with autism? Our study group was autism-friendly environment.
diagnosed and delineated several decades ago when It is possible that relatively higher IQ and relatively
the concept of autism was narrower than it is now. early onset of some communicative speech in autism
Nevertheless, strict operationalised diagnostic cri- may still be the best predictors of a better outcome,
teria were used when assigning diagnoses of autism/ but much more needs to be done in terms of quality-
atypical autism. However, it is likely, indeed highly of-life research in the field before clinical implica-
probable, that – with the methodology used at the tions of these correlates can be fully understood. At
time (mostly the 1970s and the 1980s) – many the present time it would appear that it is still
individuals with autistic symptoms and IQ-test re- impossible to separate out which of the early child-
sults within the normal range would have been hood factors autism, intellectual level and verbal
excluded as falling outside the autism category in the ability have the best predictive power for adult
original study. Our results are therefore probably symptom outcome.
only generalisable to the low- and middle-function- In summary, this study provides detailed infor-
ing groups with autism rather than the high-func- mation about the symptomatic manifestations of
tioning group. Nevertheless, in some areas of autism in adulthood. It demonstrates the very per-
functioning, particularly those related to impairment sistent nature of the social-communication recipro-
of reciprocity, almost identical problems are seen city problems experienced by individuals with
both in childhood and adulthood in low- and high- autism, and their need for help and support in these
functioning individuals with ASD – including those areas. The practical implications of this for child and
with Asperger syndrome. This suggests that the adult psychology and psychiatry, educational and
developmental trajectory in autism is partly inde- occupational services are considerable. It is import-
pendent of IQ (Howlin et al., 2004; Cederlund & ant to recognise the many different behaviour pat-
Gillberg, 2004). Even in our own small subgroup of terns in the field of autism in adults in order to
relatively high-functioning individuals with autism interpret and understand the ‘meaning’ of the
some symptoms were just as frequent as in the behaviour as correctly as possible and to provide
Ó 2007 The Authors
Journal compilation Ó 2007 Association for Child and Adolescent Mental Health.
Autism in adults: symptom patterns and early childhood predictors 1109

correct support. In developing intervention ap- background and associated factors. Developmental
proaches it is important to take account of the Medicine and Child Neurology, 46, 652–660.
characteristic behavioural patterns of the individual, Danielsson, S., Gillberg, I.C., Billstedt, E., Gillberg, C.,
even in cases that can be reliably ‘classified’ as & Olsson, I. (2005). Epilepsy in young adults with
belonging in this or that diagnostic category. autism: A prospective population-based follow-up
study of 120 individuals diagnosed in childhood.
Epilepsia, 46, 918–923.
Gillberg, C. (1984). Infantile autism and other childhood
Supplementary Material psychoses in a Swedish urban region. Epidemiological
The following supplementary material is available for aspects. Journal of Child Psychology and Psychiatry,
this article: 25, 35–43.
Gillberg, C. (1992). The Emanuel Miller Memorial
Appendix. DISCO symptoms (Word document)
Lecture 1991. Autism and autistic-like conditions:
This material is available as part of the online ar- Subclasses among disorders of empathy. Journal of
ticle from: Child Psychology and Psychiatry, 33, 813–842.
http://www.blackwell-synergy.com/doi/full/ Gillberg, C., & Gillberg, I.C. (1989). Asperger syndrome
10.1111/j.1469-7610.2007.01774.x – some epidemiological considerations: A research
(This link will take you to the article abstract). note. Journal of Child Psychology and Psychiatry, 30,
Please note: Blackwell Publishing are not re- 631–638.
sponsible for the content or functionality of any Gillberg, C., & Steffenburg, S. (1987). Outcome and
supplementary materials supplied by the authors. prognostic factors in infantile autism and similar
Any queries (other than missing material) should be conditions: A population-based study of 46 cases
directed to the corresponding author for the article. followed through puberty. Journal of Autism and
Developmental Disorders, 17, 273–287.
Gillberg, C., Steffenburg, S., & Schaumann, H. (1991).
Is autism more common now than ten years ago?
Acknowledgements British Journal of Psychiatry, 158, 403–409.
The authors wish to thank the individuals and their Howlin, P. (2003). Can early interventions alter the
families affected by autism for participation in this course of autism? Novartis Foundation Symposia,
251, 250–259.
study, and to acknowledge the support of the
Howlin, P., Goode, S., Hutton, J., & Rutter, M. (2004).
Wilhelm and Martina Lundgren Foundation and the Adult outcome for children with autism. Journal of
Swedish Science Council (grant no. 2003–4581). Child Psychology and Psychiatry, 45, 212–229.
Kanner, L., & Eisenberg, L. (1956). Child psychiatry:
Mental deficiency. American Journal of Psychiatry,
Correspondence to 112, 531–534.
Leekam, S., Libby, S., Wing, L., Gould, J., & Taylor, C.
Eva Billstedt, Göteborg University, Department of (2002). The Diagnostic Interview for Social and
Child and Adolescent Psychiatry, Kungsgatan 12, SE Communication Disorders: Algorithms for ICD-10
411 19 Göteborg, Sweden; Tel: 0046 31 701 25 43, childhood autism and Wing and Gould autistic
Fax: 0046 31 701 25 45; Email: eva.billstedt@ spectrum disorder. Journal of Child Psychology and
vgregion.se Psychiatry, 43, 327–342.
Leekam, S.R., Nieto, C., Libby, S.J., Wing, L., & Gould,
J. (2006). Describing the sensory abnormalities in
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Journal compilation Ó 2007 Association for Child and Adolescent Mental Health.

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