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Autism in adults: symptom patterns and earlychildhood predictors. Use of the DISCO ina community sample followed from childhood
Eva Billstedt,
1
I. Carina Gillberg,
1
and Christopher Gillberg
1,2
1
Institute of Neuroscience and Physiology, Go¨teborg University, Sweden;
2
University of Strathclyde, Glasgow, andNCYPE, Lingfield, UK
Background:
Few studies have looked at the very long-term outcome of individuals with autism whowere diagnosed in childhood.
Methods:
A longitudinal, prospective, community-based follow-up studyof adults who had received the diagnosis of autism (classic and atypical) in childhood (
¼
105) wasconducted. 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 originaldiagnosis. Childhood measures, including IQ-level at time of childhood diagnosis and communicativespeech registered before age 5 years, were studied in relation to the presence of autism symptoms atfollow-up.
Results:
The classical and atypical autism groups were fairly homogeneously impaired interms 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 atfollow-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-chosenactivities.
Conclusions:
Social interaction problems were still present in the vast majority of adultswith autism/atypical autism, but behavioural impairments were much more variable in adulthood.Almost all cases were reported to show persistent perceptual problems. Certain childhood measureswere 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 persistinto adulthood, and the majority of cases diagnosedin childhood continue to meet criteria for the dis-order in early adult life (Lotter, 1978; Nordin &Gillberg, 1998; Howlin, Goode, Hutton, & Rutter,2004; Billstedt, Gillberg, & Gillberg, 2005). Indi-viduals affected continue to show impairments inthe typical autism triad domains of reciprocal socialinteraction, reciprocal communication, and restric-ted behaviour patterns in adulthood (Howlin, 2003).In a telephone survey Ballaban-Gil, Rapin, Tuch-man, and Shinnar (1996) found high rates of behaviour problems among 45 adults who had beengiven a diagnosis of autism in childhood. McGovernand Sigman (2005) followed 48 individuals dia-gnosed with autism in childhood to adolescence. Allbut two still met criteria for autism. In contrast tothe continuity in diagnosis, parents describedimprovements in social interaction, repetitive/stereotyped behaviours, adaptive behaviours andemotional responsiveness to others in adolescencecompared to middle childhood. This improvementwas more evident in high-functioning adolescentswith autism than in low-functioning individuals.Seltzer stated that symptoms of autism appear to bedifferent at different stages of life (Seltzer et al.,2003).Autism in childhood has been well described.However, symptoms typical of the infant and pre-school childwith autism may havetaken on differentqualities or may no longer be evident at all in the young adult person with autism.We have conducted a follow-up study into earlyadulthood of 120 individuals diagnosed with autismin childhood (recruited from three population stud-ies). There was considerable stability over time asregards the diagnosis of autism per se (Billstedtet al., 2005). The present paper looks at distinctivesymptoms and symptom patterns within the broaderautism spectrum in this population-based cohort. The main source of information was a semi-struc-tured interview with an informant who knew theperson with autism well at age 16–40 years. Theinterview used was the Diagnostic Interview for So-cial and COmmunication disorders (DISCO) (Wing,Leekam, Libby, Gould, & Larcombe, 2002), whichwas chosen because it is particularly effective fordiagnosing disorders within the broader ‘autismspectrum’ (Leekam, Libby, Wing, Gould, & Taylor,2002) and because it yields more information about
Conflict of interest statement: No conflicts declared.
Journal of Child Psychology and Psychiatry 
48:11 (2007), pp 1102–1110 doi:10.1111/j.1469-7610.2007.01774.x
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
 
non-autism problems than most other instrumentscurrently in use. The aim of the study is to present a descriptivepicture of the most common symptoms in adultswith autism as measured by the DISCO, to find outto what extent the DISCO-algorithm and clinicaldiagnosis correlate, and to find out whether or notcertain childhood measures, derived from the ori-ginal studies, were associated with specific symp-toms within the autism spectrum in adult age.
Method
The original studies
Our study group, born in 1962–84, was recruited fromthree population-based studies from Sweden of indi-viduals diagnosed with autism in early childhood (Gill-berg, 1984; Steffenburg & Gillberg 1986; Gillberg,Steffenburg, & Schaumann, 1991). All 120 individuals(84 males, 36 females) were followed up in late adoles-cence–adult life (Billstedt et al., 2005). The originalstudies of young children comprised participants withDSM-III-R (APA, 1987) autistic disorder/infantile aut-ism (61 males, 17 females) and 42 with atypical aut-ism/autistic-like condition (23 males, 19 females). Thegroup with atypical autism/autistic-like conditions hadmet 6 or more of the 16 – but not full – DSM-III-Rcriteria for autistic disorder.
The follow-up study 
 The individuals were followed prospectively for a periodof 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-low-up study and six individuals had died at the time of follow-up (Billstedt et al., 2005). Three of the remaining108 individuals were included in the follow-up study,but did not participate in the current DISCO-study.
Clinical diagnoses at follow-up
At follow-up, individuals who met criteria from at leasttwo of the three domains of the triad of social, com-munication and imagination/behavioural impairmentsreceived autism spectrum disorder (ASD) diagnosesafter clinical assessment. ASD cases were then subdiv-ided into three groups: (1) those with
autistic disorder/childhood autis
who met criteria for this diagnosisaccording to the DSM-IV (APA, 1994)/ICD-10 (WHO,1993), (2) those with
atypical autism 
according to theICD-10 in cases showing 4 or more of the 12, but notfull DSM-IV/ICD-10 diagnostic criteria for autistic dis-order/childhood autism, and (3) those with other ASDnot meeting criteria for autistic disorder or atypicalautism. In addition, the diagnostic criteria for
Asperger syndrome 
by the Gillbergs (Gillberg & Gillberg, 1989)were also checked. Clinical diagnoses were made con- jointly by the first (E.B.) and second (I.C.G.) authors of this paper, who were blind to the original specificchildhood diagnosis and symptomatology, based on allavailable information from psychiatric-psychological-medical assessment. The third author (C.G.) hadexamined all cases in childhood and was aware of theirchildhood diagnosis but did not take part in theassessment in the follow-up study.
Participants
One hundred and five individuals (75 males, 30females) with childhood diagnoses of autistic disorder/infantile autism (56 males, 15 females) or autistic-likeconditions/atypical autism (19 males, 15 females) wereincluded in this follow-up study. At follow-up, 89 of the105 participants were clinically diagnosed as havingautistic disorder. Fifteen individuals were diagnosed ashaving atypical autism and one individual did not meetcriteria for an ASD.
Intellectual functioning
All participants had undergone testing before 10 yearsof age. Only one-fourth of all individuals included wereable to take a complete IQ-test (Wechsler, 1981, 1992)at follow-up. However, all participants were assessedusing the Vineland Adaptive Behavior Scales (VABS;Sparrow, Balla, & Cicchetti, 1984) allowing a reason-able estimate of whether or not an individual should bediagnosed as belonging in the severe learning disability(SLD) category (see Billstedt et al., 2005). In the autismgroup, SLD was diagnosed in 50 cases (70%), mildlearning 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, SLDwas diagnosed in 26 cases (76%), MLD in 7 cases (21%)and A in 1 case (3%).
The DISCO
 The DISCO is a 2–4-hour standardised interviewintended for interviewing a person who has known theindividual with suspected autism spectrum disorderfrom earlychildhood.The purposeof usingit isto assistcliniciansinthediagnosticwork-upandcareofpersonswith autism spectrum and other developmental dis-orders affecting social interaction and communication(Wing et al., 2002). Its algorithm enables one toinvestigate whether the necessary criteria of differentdiagnostic systems are met. The diagnostic systemsthat are used are ICD-10 (WHO, 1993), DSM-III-R (APA,1987) and DSM-IV (APA, 1994). Algorithms based onKanner’s ‘Early Infantile Autism’ (Kanner & Eisenberg,1956), Gillberg and Gillberg’s definition of AspergerSyndrome (1989), Wing & Gould’s ‘Autistic SpectrumDisorder’ (ASD; 1979), and ‘Social Impairment’ (1979)are defined and used.From the DISCO one obtains an ‘ever’ diagnosis,which is retrospective, as well as a ‘current’ diagnosis(‘ever’ includes ‘current’). During the DISCO interview,responses to more than 300 questions are coded forcomputer entry. The questions are divided into threegroups pertaining to: (i) current level of function, (ii)delay in acquiring relevant skills, and (iii) untypicalbehaviours associated with the relevant skills. In thispaper the ‘current’ responses on untypical behaviourare presented. A few items were not relevant to a larger
Autism in adults: symptom patterns and early childhood predictors
1103
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2007 The Authors Journal compilation
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2007 Association for Child and Adolescent Mental Health.
 
partofthe groupandweretherefore notincludedinthisstudy. Included were 22 social interaction items, 17communication items, 28 routines/stereotyped beha-viour items, 20 sensory items, 26 emotional problem/maladaptive behaviour items, and 19 items concerningself-care, motor skills and activity. Problems were ratedas ‘marked’, ‘minor’ or ‘no problems’.
Other scales/measures used 
 The DSM-III-R Global Assessment of Functioning scale(GAF; American Psychiatric Association, 1987), Lotter’scriteria (1978) for the classification of outcome and apsychiatric-medical assessment were also included. The results from these measures have been reportedelsewhere (Billstedt et al., 2005).
Procedure
 The DISCO interviewees were parents or other closefamily members (grandparents, siblings or foster-par-ents) in 91 cases. In the remaining 14 cases the inter-vieweeswereprofessionalcaregivers(i.e.,teachers,staff in day-centre activities or group homes). The interviewswere conducted either in an outpatient clinic, in thehome of the individual with ASD or in the home of theinterviewee.
Study of adult symptoms and their links to certainchildhood measures
For the study of possible associations between somespecific ASD symptoms and certain childhood meas-ures, the following approach was used. The algorithmfor Wing and Gould’s ASD is based on 7 items. All theseitemsareinvestigator-basedratingstakingintoaccountall the information obtained from the whole DISCOinterview. One concerns the current quality of socialinteraction (aloof, passive, active but odd, over-formal,shy, electively mute, chatty/friendly (typical of Williamssyndrome) or appropriate). A second item concerns theindividual’s style of communication (communicatingonly needs, one-sided and repetitive, or truly recipro-cal). A third item concerns the current overall pattern of activities (narrow and repetitive or varied and flexible). The remaining 4 items are related to imagination andpretence. Many parents/caregivers were able to provideonlypartialinformationforthese4items,andtheyweretherefore not included in the study of childhood meas-ures. Thus, only the three first (social, communicationand pattern of activities) items of the DISCO ASDalgorithmwere correlated tochildhood measures inthisstudy. The childhood measures (derived from the ori-ginal studies) were: (1) gender, (2) childhood IQ/DQ-level(categorised inSLD,MLD,NAandAcategories),(3)presence of some communicative speech before 5 yearsof age (as noted in childhood records), (4) epilepsy (on-set before 5 years of age and onset after 5 years of ageup until one year before follow-up as evidenced byrecording in childhood files, see Danielsson, Gillberg,Billstedt, Gillberg, & Olsson, 2005), (5) medical dis-orders regardless of presence or not of epilepsy (asdetailed in medical records at the time of early child-hood population studies), (6) childhood ASD diagnosis,and (7) immigrant parents (at least one parent born inforeign country).
Statistics
Spearman’s correlation was used to investigate therelationship between DISCO items and symptoms. Wethen used stepwise regression techniques to evaluatethe relative contribution of each background factor tooutcome in terms of specific DISCO ASD algorithmsymptoms. We used stepwise regression in the SPSSstatistical package, where 6 predictors were enteredconsecutively to maximise each of the 3 autistic spec-trum algorithm items. Probability level for entry orexclusion was .05.
Ethics
 The study was approved by the Medical EthicalCommittee of Go¨teborg University.
Results
DISCO-10 diagnoses in the study group at follow-up
Eighty-two of 89 (92%) in the adult clinical autisticdisorder group and 3 of 15 individuals (20%) in theadult clinical atypical autism group met DISCO-algorithm criteria for autistic disorder. Seven indi-viduals in the adult clinical autistic disorder group(8%) and 12 individuals (80%) in the adult clinicalatypical autism group met the DISCO-algorithmcriteria for atypical autism. In the autistic disordergroup, 15 (17%) met also Kanner’s criteria for earlyinfantile autism according to the DISCO, and an-other 13 individuals (17%) met Gillberg and Gill-berg’s criteria for Asperger syndrome (1989). In theatypical autism group, 1 man (7%) met the criteriafor Asperger syndrome according to Gillberg andGillberg (1989) and none in this group met Kanner’scriteria for early infantile autism. All individuals metcriteria for Wing and Gould’s definition for SocialImpairment and ASD.
Specific symptoms
Given that, at the symptom level, there were fewdifferences across clinical diagnostic groups, theautistic disorder and atypical autism groups werecollapsed and referred to as the ASD group. Table 1shows all the untypical social interaction, commu-nication and behaviour symptoms that were pre-sent in half or more of the study group.Percentages are calculated on the basis of resultsobtained in 98–105 individuals (missing data in afew cases for certain items). A detailed presentationof all DISCO symptoms is published in an online-only Appendix.
Social interaction.
Overall rates of abnormal socialbehaviourwere high.No
interactionwithagepeers 
or
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Eva Billstedt, I. Carina Gillberg, and Christopher Gillberg
Ó
2007 The Authors Journal compilation
Ó
2007 Association for Child and Adolescent Mental Health.
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