Autism and autistic-like conditions in Swedish rural and urban areas: a population study

S Steffenburg and C Gillberg The British Journal of Psychiatry 1986 149: 81-87 Access the most recent version at doi:10.1192/bjp.149.1.81

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British Journal of Psychiatry (1986), 149, 8 187

Autism and Autistic-like Conditions in Swedish Rural and Urban Areas: A Population Study
SUZANNE STEFFENBURG and CHRISTOPHER GILLBERG

The total population of children under 10 years in one Swedish urban area and one rural area was screened for infantile autism (IA) and autistic-like conditions (AC). A total prevalence of 6.6 per 10 000 was found, which is somewhat higher than in previous similar studies of the same region. Infantile autism accounted for two-thirds of the cases. Boys far outnumbered girls, but this was entirely accounted for by the IA group. The preponderance

of autistic boys was less pronounced among the severelymentally retardedchildren.

Mental retardation was seen in almost 90% of cases and only one child had an lQ exceed ing 100; clinical and laboratory signs of brain dysfunction were also found in a majority of cases. Distribution by social class was no different in either patient group from the general population. To our knowledge there exist four published
stereotyped behaviour (elaborate routines) gested by Kanner & Eisenberg (1956). sug

population-based studies of infantile autism and similar conditions (Lotter, 1966; Wing & Gould,

1979; Gillberg, 1984; Bohman et al, 1983). These

have all yielded fairly consonant results, with frequency figures ranging from 4 to 6 per 10000 children, nuclear autism' accounting for about half of these. The frequency figures are almost stunningly similar in view of the well known fact

Two ofthe population-based studies originated in Sweden. These might be considered to be of special
interest, as they represent
in areas with quite

investigations
social

performed
and

different

structures

were performed by researchers who discussed diag nostic criteria in some detail. The study by Bohman et a! (1983) was performed in the late l970s in an

that the diagnosis of infantile autism continues to almost exclusively rural area in northern Sweden, cause controversy. Wing & Gould (1979) made whereas the one by Gillberg was done in the same claims for a new diagnostic category, viz. the period in a large industrial urban area in the triad of language and social impairments', in which south-west of Sweden. The rural study came up they included cases of nuclear autism'. They found with a frequency for childhood psychosis' of 6 per frequency figures for this triad of 21 per 10000 in a 10000, classical autism' accounting for half of the south-east London borough. Gillberg, working in cases. The urban study, on the other hand, yielded a Gothenburg, Sweden, obtained exactly the same corresponding figure of 4 per 10 000, infantile figure for the estimated frequency of the triad in autism' cases again constituting about 50%. The the general teenage population (21 per 10 000) by difference between the results of these studies might extrapolating from studies of the mentally retarded prove to be due to chance; or it might turn out to be (Gillberg et al, 1986); and an even higher estimate important, considering the well known facts that for the general population when children with child psychiatric problems in general are very much minor neurodevelopmental disorders were screened more common in urban than in rural areas (Rutter (Gillberg, l983a). The studies by Wing and Gillberg et a!., 1970; Rutter, 1975) whereas mental handicap show that there exist a number of children with syn tends to be distributed the other way around. dromes similar to infantile autism in terms of both Gothenburg and its neighbouring rural area (the symptomatology and needs for services, and both county of Bohusln)now provide unique possibili these authors have argued for a spectrum view' of ties for population-based studies of infantile autism autism. However, both authors agree with Rutter and similar conditions. We performed population (1978) in acknowledging the existence of a core screenings in 1978 and 1980 and these paved the way group of classically autistic children within this for intensified detection and diagnostic services in the area. We therefore considered it of special value spectrum. These are the kinds of children originally
described by Kanner (1943) and said to fulfil the

crucial diagnostic criteria of autistic aloneness and 81

to perform new population screenings in these areas, in order (a) to shed some further light on the issue

82

STEFFENBURG,GILLBERG
for psychotic' children
performed two major

of diagnosis, and (b) to analyse the importance of certain demographic factors in autism and autistic

have been rapidly

studies,

developed

in

Gothenburg and Bohusln. second author (C.G.) has The

screening one in 1978 and the

like conditions. Definitions Infantile autism (IA) was defined in accordance

with the criteria of the DSM-III (A.P.A., 1980), which requires: (a) Onset before 30 months of age (b) Pervasive lack of responsiveness to other people (autism) (c) Gross deficits in language development

other in 1980. These have led to markedly increased interest

in autism and similar conditions among paediatricians,

child psychiatrists, child neurologists, audiologists, well

baby clinic personnel, school health officers(doctors, nurses and psychologists), teachers, and officials concerned with
mental
autism

retardation.
to all these

Both authors
categories

have given lectures on

and the

of professionals,

symptoms of autism and autistic-like conditions as they appear from infancy through childhood have been
described in some detail.

At the present time, most children in Gothenburg and

Bohusln who are suspected of suffering from autism and autistic-like conditions are referred to the second author for a diagnostic evaluation. Six or seven years ago, many
autistic and autistic-like children were referred for the first time only after the age of seven years. Nowadays, most

(d) If speech is present, peculiar speech patterns

such as immediate and delayed echolalia, metaphorical language, pronominal reversal (e) Bizarre responses to various aspects of the

environment, e.g. resistance to change, pecu liar interest in or attachments to animate or

inanimate objects

children with autism have their condition diagnosed at a

much earlier age, often at 12ears, very rarely after age 5 y years.

(j) Absence of delusions, hallucinations, loosen ing of associations, or incoherence, such as are
found in schizophrenia.

In Sweden the child health services encompass 99% of all children, who have regular medical check-ups almost every year before age 10 years. Before starting school
they are seen at age 6 years by a clinical psychologist. All

All children with IA also fulfilled the criteria of children known to the Board for Provisions and Services to both Rutter (1978) and Coleman & Gillberg (1985) the Mentally Retarded (BPSMR) have medical check-ups for infantile autism. In the following text this yearly. diagnostic entity isalsoreferredo as autism' It is improbable that any large fraction of children with t or autism or autistic-like conditions could escape recognition autistic syndrome'.
in a region where coverage is so nearly complete and knowledge in this particular field is at a fairly high level. Autistic-like conditions (AC) were defined as con
Questionnaire screening

ditions similar to IA in respect of symptomatology, but either showing some highly atypical traits (e.g.
extremely clinging behaviour or confusion) or

In November 1984, a letter of information and a question commencing after theage of 30 months (according naire were distributed to all paediatricians, child psychia to medical/psychological record data). What we refer trists and doctors working in the institutions for the to as autistic-like conditions' have been referred to as mentally retarded, phoniatric/audiology departments, school health authorities and well-baby clinics in the city of other childhood psychoses' in previous publications.
Gothenburg and the county of Bohusldn, with the request

Method
Populations Urban: studied born during the years 19751984 and All children

living in the city of Gothenburg on 31 December 1984 constituted the urban target population. The total number of children in this population was 42886 (21 949 boys and
20937 girls). Rural: All children born during 19751984 and living in

that the questionnaire be completed and returned within two months. All schools (including special schools for autistic, mentally retarded, maladjusted, blind and deaf children) are regularly surveyed by paediatricians, child psychiatrists, ophthalmologists or audiologists. This meant that the screening by questionnaire was not limited to children
referred to clinics. Furthermore the second author (C.G.) is in charge of the medical section of the BPSMR (covering Gothenburg and Bohusldn) and of services and schools for autistic children within the Child Psychiatric University

the county of Bohusln 31 December 1984 constituted on the rural target population. The total number in this
population was 35 527 (18 268 boys and 17259 girls).

Clinic in Gothenburg. This means that he has himself

examined all possibly autistic or definitely autistic chil dren attending schools for mentally retarded and autistic

Organisation of services and Bohusln

for autistic

children

in Gothenburg

children in Gothenburg and Bohusln. Each doctor receiving a questionnaire was asked if he/she (or any of his/her collaborators) knew of any child born in 1975 or later with infantile autism, childhood
schizophrenia, childhood psychosis, mental retardation

During the last ten years diagnostic and treatment facilities

AUTISM IN SWEDISH RURAL AND URBAN AREAS

83

with autistic traits, severe disturbance of social relation ships plus speechlanguage isorder, or severe compulsive d disorder'. The doctor was requested to state the child's diagnosis, give a short description of the symptoms, report age of onset, summarise tests and other investigations,

January 1985 in order to identify cases of infantile autism', childhood psychosis' childhood schizophrenia' and mental retardation with autistic traits'.
Diagnostic procedure

describe treatment given, and also describe the type of

dwelling and the school attended by the child. Through the questionnaire we also reached all clinical child psy chologists working in the region, as they all work in close collaboration with the doctors we contacted. All persons (doctors, psychologists, social workers, teachers, physio therapists, etc.) known to be involved with services for psychotic children were contacted personally by the second author and interviewed in accordance with the
questionnaire.

All children reported were either dismissed as non suspected' cases after we had conducted a thorough inter view with the reporting doctor, psychologist or teacher, or were personally assessed by the second author (C.G.): more than 90% of the reported cases were known to the second author already before the questionnaire screening.
Clinical assessment

Register search

The registers of the child psychiatric/child guidance clinics, paediatric clinics and the BPSMR were searched in

All children known by the second author personally to suffer from infantile autism and similar conditions had previously been thoroughly examined by him. All the case records (medical and school reports) of these children were re-analysed.

TABLEI

Nwnber of cases of infantile autism (IA) or autistic-like conditions (AC) in Gothenburg (urban) and Bohusln (rural) at the end of 1984
Year of birthIAAC.Total(IA+AC)GothenburgBohusldnGothenburg Bothusl.nBoysGirlsAll197519777126222527197819801026113619198119843102426Total2015125391352

Prevalence figures for

TABLEII infantile autism (IA) and autistic-like

conditions

(AC)

in

Gothenburg (urban and Bohusln(rural) at the end of 1984 (among children born 19751 984) groupGothenburgBohuslnTotalInfantile Diagnostic autism prevalence 5.7:1Autistic-like boy:girl ratio14.7/l0@ conditions prevalence 1.2:1IA ratio'2.8/10k boy:girl +AC combined prevalence boy:girl rati&7.5/10'
1Population-bascd

5.4:14.2/l0@ 6.1:14.5/10k

1.0:11.4/10k

1.4:12.2/10'

2.4:15.6/10'

3.8:16.6/10'

2.9:1

ratio, adjusted to allow for boy:girl ratio in the general population

84
Intellectual levels (/Q.s) u/hors

STEFFENBURG,

GILLBERG

TABLEIII
and girls with in/ntile autism (IA) combined and autistic-like conditions (A C): urban and rural areas

Intellectual

level
0/s)bov:girln( %)boy:girl21(60%)l6B:5G9(53%)4B:5G30(58%)20B:lOG1Q50

lQ <50IAACIA+ACn(%)bov:girln(
70lO(29%)IOB:OG6(35%)5B:1G16(31%)15B:lGlQ
l%)4B:OG2(12%)OB:2G6(12%)4B:2GTotal35(100%)30B:SG17(100%)9B:8G52(100%)39B:13G >704(1

Children suspected of suffering from psychosis on the basis of the questionnaire reports and not known by the

author were assessed using routine clinical child psychi

atric techniques.
scrutinised.

conditions (Table II). Infantile more common than autistic-like per 10000).
Bohusln (rural):
in the rural county

autism was considerably conditions (4.7 versus 2.8

Relevant case records were collected and

The prevalence
was 5.6 per

A majority of the children in the study had already been

tested with the Griffiths Developmental
(Magne severely & Wahlberg, mentally 1961). The

for IA and AC combined

10000. IA was more fre

Scale for Children

children had

(Griffiths 1970) and the Vineland Social Maturity Scale

remaining

quent than AC, accounting for 4.2 per 10000 children.

Intellectual level

been considered Behavior

untestable
retarded

and werejudged
(IQ less than

clinically to be
50). The Autism

Checklist

(Krug

et al, 1980) and a newly con in all cases.

structed interview schedule pertinent to the study of autism

were used to elicit relevant information

Slightly more than half of the children were severely men tally retarded (Table III). One-third of this group consisted

of children with tested IQs in the 4050ange. A large r

majority of the remainder had developmental or social quotients below 30. About 15% of the children were of normal or near-normal intelligence.

A diagnosis of infantile autism (IA). autistic-like con dition (AC), or non-autistic/non-autistic-like' assigned was
in each case.
Statistical methods used

Chi-square results.

tests were used in the statistical

analyses of the
Obvious infantile

TABLE IV clinical organic signs of handicap associated with autism (IA) and autistic-like conditions (AC): urban and rural areas combined

Results
Numbers of children with IA and A C Gothenburg (urban):

There were 20 children (17 boys and 3 girls) with infantile autism in Gothenburg (Table I). Of these, only three were
aged 4 years or under at the time of the study. Twelve more

Clinical signIA (n=17)Epilepsy5(14%)7(41%)Moebius

(n=35)AC

children (6 boys and 6 girls) with autistic-like conditions

were identified: all of these were aged 5 years or older.

Bo/zusln (rural): old. A further

There

were

15 children

(13 boys

and

syndrome3(9%)MartinBell syndrome'3(9%)Tuberous sclerosis1(3%)LaurenceMoonBiedl syndrome1(3%)Hydrocephalus1(3%)Neurofibromatosis1(3%)Hearing

girls) with IA in Bohusln. One of these was under 4 years

five children (three boys and two girls) were deficits1(6%)Cerebral

found to have AC: two of these were under 4 years old.

palsy1(6%)Total
Population Gothenburg prevalence (urban): Altogether 7.5 per 10 000 of all chil

number at Children14(40%)8(47%) suffered from autism or autistic-like

Several more children had other chromosomal abnormalities

dren in Gothenburg

AUTISM

IN SWEDISH

RURAL

AND URBAN

AREAS

85

than an almost identical study performed a few In the autistic group the boy:girl ratio was 5.7:1 after years earlier by the same team in the same region adjustmentfor the boy:girlratio in the generalpopulation. (Gillberg, 1984). The previous study found a total of In the group with autistic-likeconditions the correspond 4.0 such children per 10 000, infantile autism
Boy:girl ratios ing ratio was 1.2:1. Among the severely mentally retarded retardation: this trend was particularly pronounced in the autistic group. Associated handicaps group with autistic-like conditions had obvious clinical organic signs' (other than mental retardation)indicative of CNS-dysfunction (Table IV). A majority of the children in both groups had radiological, physiological or chemical accounting for half the cases: the new study showed

children (IQ <50) the boy:girl ratios were much lower a total prevalence of 6.6 per 10 000, infantile autism than among those with milder degrees of intellectual accounting for two-thirds of the cases. The higher
prevalence is probably due to better detection of cases in the new study. It is highly unlikely that autism has become relatively much more common in only five years. The prevalence figure obtained

Two-fifths of the autistic group and almost half of the now is very close to that found by Bohman et a! (1983) in northern Sweden, in another area with
good coverage and relatively well-developed assess

signsof nervous-system damageor dysfunction.

Almost a quarter of the children had developed epilepsy (Table IV). This was much more common in the group with AC. Two-thirds of the children with seizures were girls. Ten of the 12children with epilepsy had had an onset of seizuresbefore 12months. Three autistic boys suffered from congenital bilateral
palsy of the facial nerves (Moebius syndrome) and another

ment facilities. In our region, autism detection sensibility' has been raised most particulaarly among those work
ing with the mentally retarded from 1980 through to

1984: almost all of the extra' prevalence of autism

and autistic-like conditions found in this study com

pared with our previous ones is accounted for by

severely mentally retarded children. The prevalence of autism and similar conditions among mildly retarded and normally intelligent children is almost

three had the Martin-Bellsyndrome with some or all the

physical characteristics of that diagnostic entity and the

fragile(X) (q273)chromosomalabnormality.
TABLE V

exactly the same as in the previous studies. There were slight (though statistically insignifi
cant) differences in prevalence between urban and

rural areas, with urban prevalence being higher.

Whether these findings reflect real differences or dis similarities with regard to coverage and assessment facilities is not yet known. This difference in preva

Analysis by autistic-like 7-year-olds statistically

social class of children with infantile autism or conditions, compared with a random sample of from the general population. There were no sign@fi ant differences between the three groups c

lence does not accord with previous suggestions

(Gillberg, 1984) that autism might be more common in the countryside than in cities. Social classIAACGeneral populationI1(3%)1(6%)4(7%)II10(29%)6(35%)24(41%)III24(68%)10(59%)31(53%) autism' be a more common The tendency for to

diagnosis than autistic-like conditions' (or other

childhood psychoses')is probably a result of increas

Social class There was no obvious or significant social-class bias (class

assessedaccordingto father's occupation:SwedishCentral

Bureau of Statistics, 1968)in either the IA or the AC group when contrasted with a randomly selected group of normal seven-year-olds (this latter group is described in detail in Gillberg & Scbaumann, 1982). If anything, there was a

slight trend towards lower social class among the autistic

and autistic-like children (Table V).

ing awareness of the early symptoms, leading to early referral. As in our previous studies, our diagnoses of infantile autism did not rely on medical records except to confirm the presence of central symptoms before age 2@ years. We would argue for the abolition of the term other childhood psychoses' when referring to autistic-like conditions: the major clinical signs and symptoms in these groups of children really do qualify them for the description of autistic-like'. True, there exist symptoms not typically seen in autism (such as confusion and extremely clinging
behaviour) and the onset is usually somewhat later than in infantile autism, but the similarities are really overwhelming. The boy:girl ratio is considerably higher in this study than in our previous ones. An overall ratio of

Discussion
This population-based study of autism and autistic

like conditions yielded higher prevalence figures

2.7:1 was found this time, compared with 1.8:1 four

86

STEFFENBURG,GILLBERG well with modern studies of social factors in infan tile autism (Wing, 1980; Gillberg & Schaumann, 1982; Bohman et a!, 1983). There is now a con

years ago. Infantile autism was found by this study to be more than five times as common in boys as
in girls, whereas autistic-like conditions tended to

be only marginally

more common

among boys. As

vincing body of evidence from population-based

studies that infantile autism is not associated with high social class, and we hope that the fruitless arguments about this issue will finally come to an end. Finally, we would like to draw attention to the fact that there exist other children, far out numbering those in the present study, with autism spectrum' problems or autistic traits'. These have been referred to as children with psychotic behav iour' (Gillberg, l983a, 1983b) or the triad of language and social impairment' (Wing & Gould,

in Lorna Wing's study (Wing, 1981) and our own

previous studies, there was a clear trend towards decreasing boy:girl ratios with decreasing IQ. In spite of our efforts to reach all possibly autistic children in the areas studied, we are aware that we might have missed some very young autistic children and a few with very high IQ levels. We do not believe, however, that any considerable fraction of mentally retarded children with autism or autistic like conditions could have been missed. A third of the IA and half of the AC children had obvious clinical organic signs such as epilepsy, tuberous sclerosis, neurofibromatosis and the fragile (X) syndrome. Almost all the autistic children showed clinical, radiological, neurophysiological or neurochemical signs indicative of central nervous system damage/dysfunction (Gillberg, 1985). These results are in sharp contrast with those presented in the early days of infantile autj.sm, when the disorder was supposed to be psychogenic. Social class did not differentiate either of the index groups from a comparison group of primary school-age children without major handicaps. If anything, there was a trend (statistically insignifi cant) towards infantile autism being relatively more common in low social classes. This result accords

1979). Among severely mentally retarded children these traits occur fairly often (Gillberg et a!, 1986)
and they are also seen frequently in children with

moderate degrees of motorperceptualdisturbance.

No attempt was made in this study to detect all such cases.

Acknowledgements

We are grateful to all the doctors, psychologists and teachers who kindly provided the necessary data, and to

Mrs Gun Jakobsson and Doris Andrn secretarial for

assistance. The study was supported by a grant to C.G. from the Swedish Medical Research Council (B85-2lP-6750-02).

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Suzanne Steffenburg, Gteborg,Sweden

MD, Research Assistant,

BUP-k!iniken,

University of Go:eborg, Box 7284, S-402 35

*Christopher Gillberg, MD, Proftssor of Child and Adolescent Psychiatry and Proftssor of Handicap
Research, BUP-kliniken, University of Goteborg, Box 7284, S-402 35 Goteborg, Sweden

Correspondence
(Accepted 30 October 1985)