J Autism Dev Disord (2008) 38:7285

DOI 10.1007/s10803-007-0364-6

ORIGINAL PAPER

Asperger Syndrome and Autism: A Comparative Longitudinal

Follow-Up Study More than 5 Years after Original Diagnosis
Mats Cederlund Bibbi Hagberg Eva Billstedt
I. Carina Gillberg Christopher Gillberg

Published online: 6 March 2007

Springer Science+Business Media, LLC 2007

Abstract Prospective follow-up study of 70 males with

Asperger syndrome (AS), and 70 males with autism
more than 5 years after original diagnosis. Instruments
used at follow-up included overall clinical assessment,
the Diagnostic Interview for Social and Communication Disorders, Wechsler Intelligence Scales, Vineland
Adaptive Behavior Scales, and Global Assessment of
Functioning Scale. Specific outcome criteria were used.
Outcome in AS was good in 27% of cases. However,
26% had a very restricted life, with no occupation/
activity and no friends. Outcome in the autism group
was significantly worse. Males with AS had worse outcomes than expected given normal to high IQ. However, outcome was considerably better than for the
comparison group of individuals with autism.
Keywords Asperger syndrome
Autism
Follow-up

Intellectual ability
Outcome
DISCO

Introduction
Asperger syndrome (AS), described as autistic psychopathy already in 1944 by the Austrian paediatrician

M. Cederlund (&)
B. Hagberg
E. Billstedt

I. C. Gillberg
C. Gillberg
Department of Child and Adolescent Psychiatry, Institute of
Neuroscience and Physiology, Goteborg University,
GoteborgKungsgatan 12, 411 19, Sweden
e-mail: mats.cederlund@vgregion.se
M. Cederlund
B. Hagberg
E. Billstedt

I. C. Gillberg
C. Gillberg
Queen Silvias Child- and Adolescent Hospital,
Otterhallegatan, 12 A, 411 18 Goteborg, Sweden

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Hans Asperger (Asperger, 1944), did not appear as

a diagnostic entity until the early 1980s after being
reintroduced by Lorna Wing (Wing, 1981). The first set
of diagnostic criteria were formulated by Gillberg and
Gillberg (1988/1989). The Diagnostic and Statistical
Manual of Mental Disorders (DSM-IV), and the ICD10 classification of Mental and Behavioural Disorders,
did not publish diagnostic criteria for AS until well into
the 1990s (APA, 1994, WHO, 1993). These criteria
have been widely criticized (e.g., Leekam, Libby,
Wing, Gould, & Gillberg, 2000; Miller & Ozonoff,
1997), and there is still no consensus as to how AS
should best be delineated. The Gillbergs six criteria for
making the diagnosis of AS are based on Hans
Aspergers original publication and require major
problems with social interaction (e.g., impairing difficulties making friends and understanding social cues),
narrow interests, repetitive routines, speech and language (e.g., odd ways of using expressive language, odd
speech, intonation problems, and difficulties understanding others), non-verbal communication problems,
and motor clumsiness. At least 9 symptoms are required for a diagnosis of AS. The DSM-IV criteria for
AS specify impairments in social interaction (defined
as for autism), restricted, repetitive, stereotyped
behaviour (defined as for autism), and absence of
clinically significant delay in language or cognitive
development, including self-help skills, adaptive
behaviour and curiosity about the environment, in the
first 3 years of life (see Appendices). Only 3 symptoms
are required for a diagnosis of AS.
Over the years, there has been much discussion
about whether or not AS and so-called High Functioning Autism (HFA) are separate, similar or identical conditions (Gillberg, 1998; Mesibov, Kunce, &

J Autism Dev Disord (2008) 38:7285

Schopler, 1998; Wing & Potter, 2002). Although high

verbal intelligenceincluding better verbal than performance skills on the Wechsler scalesand earlier
language development have been noted to be more
common in people with AS than in classic autism, no
research has so far been able to show clear-cut differences between people diagnosed with HFA as compared with those who have been given a diagnosis of
AS (Eisenmajeret al., 1998; Gilchrist et al., 2001;
Howlin, 2003).
Very few reports on the outcome of AS have been
published. They have referred to small or highly selected clinical case samples without comparison groups
and have reported low levels of employment and social
functioning (Green, Gilchrist, Burton, & Cox, 2000;
Tantam, 1991; Tsatsanis, 2003; Wing, 1981). In this
study psychosocial functioning includes aspects of
employment/studying, relationship to others, independent living, and absence of psychiatric problems.
Intellectual decline over time, as measured by the
Wechsler scales, was reported in one study of the
intermediate term outcome of AS (Nyden, Billstedt,
Hjelmqvist, & Gillberg, 2001), but has not been observed in later studies. A tendency towards closing of
the gap between superior verbal and inferior non-verbal skills over time has been observed (Szatmari, 2003,
personal communication). Recent studies of the shortterm outcome of AS have suggested a substantially
better outcome than in autism, which may have been
due to earlier and more effective interventions, or to
other factors (Starr, Szatmari, Bryson, & Zweigenbaum,
2003; Szatmari, Bryson, Boyle, Streiner, & Duku, 2003;
Tsatsanis, 2003).
Outcome in classic cases of autism has been investigated in a number of studies in the past. The rate of
poor or very poor psychosocial outcome (isolated life
with high degree of dependency on others) has been
around 50% (e.g., Gillberg & Steffenburg, 1987;
Howlin, Mawhood, & Rutter, 2000; Howlin, Goode,
Hutton, and Rutter, 2004), and IQ has decreased over
time (Billstedt, Gillberg, & Gillberg, 2005).
The present study is probably the first ever to
present a long-term perspective on the natural outcome of a reasonably large group of males with AS.
The background and associated factors of the AS
group have been outlined in two previous publications
(Cederlund & Gillberg, 2004; Gillberg & Cederlund,
2005). The AS group was contrasted with a similarly
aged group of males with classic autism/atypical autism
followed up using identical/similar instruments.
One aim of the study was to examine the diagnostic
stability over time within the autism spectrum, in this
case the stability of AS as diagnosed on the basis of the

73

criteria formulated by Gillberg and Gillberg (1989) and

Gillberg (1991), and of autistic disorder and atypical
autism as diagnosed according to the DSM-IV. Another aim was to estimate the frequency of severe
psychiatric disorder (psychosis) in the investigated
groups, given earlier reports of a high frequency of
such disorders within the autism spectrum (e.g., Wozniak
et al., 1997; Wolff, 1995). Finally, there has been controversy about the rate of criminal offence within the
AS/HFA group particularly after the publication of
reports documenting a high rate of these diagnoses
among highly selected samples of offending psychiatric
patients (e.g., Siponmaa, Kristiansson, Jonsson, Nyden,
& Gillberg, 2001; Scragg & Shah, 1994), and so our
third aim was to examine the prevalence of such offence committed by individuals with AS and autism in
early adult life.
Some individuals with a diagnosis of Asperger syndrome in childhood appear to do well in adult life, and
this has led some people to question the appropriateness of making the diagnosis at all. Could the diagnosis
of Asperger syndrome actually contribute to problems
(such as the supposed stigma of having a diagnosis at
all) in certain cases? We consider that, if diagnoses are
only made in individuals who have clinical impairment,
this would not be an issue. In the present study we used
the Global Assessment of Functioning (GAF) scale to
score psychosocial functioning, so as to determine
whether or not an individual, who fulfils symptom criteria for AS should also be given the diagnosis of AS.
The following hypotheses were tested: (i) diagnoses
within the autism spectrum are stable over time, (ii)
AS has a psychosocially better outcome than autism,
(iii) better outcome in AS is attributable to higher IQ,
(iv) intellectual ability declines over time in these disorders, (v) individuals with higher verbal IQ have the
best psychosocial outcome, (vi) those with an earlier
diagnosis have fewer problems in early adult life, (vii)
there is a higher frequency of severe psychiatric disorders (psychosis), than in the general population,
(viii) involvement with the police and the law is at the
same rate as in the general population.

Methods
AS group
One-hundred males with AS, 1636 years old, diagnosed at the Child Neuropsychiatric Clinic (CNC) in
Goteborg, Sweden, in the years 19851999, were approached for inclusion in the follow-up study. They
were born 19671988, and had been diagnosed with AS

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J Autism Dev Disord (2008) 38:7285

at ages 5.524.5 years. Mean age at diagnosis was

11.3 years (SD 3.8 years), which is in keeping with
previous findings (Howlin & Ashgarian, 1999). They all
fulfilled the Gillberg and Gillberg criteria for AS
(Gillberg 1991; Gillberg & Gillberg, 1989), which had
been in use at the clinic since 1985.
Criteria for inclusion in the follow-up study were (i)
normal intelligence (IQ > 70) at diagnosis on the
Wechsler scales (WISC-R (n = 40), WISC-III (n = 52)
or WAIS-R (n = 8)), (ii) AS diagnosis made 5 years
prior to follow-up, and (iii) age 16 years at the census
date 30/06/2004. We included males only, since no
more than 7 females meeting inclusion criteria were
found. The AS group had been assessed on the
Wechsler scales (Wechsler, 1974, 1992a, 1992b) at
original diagnosis, and had had the following mean
results: Full Scale Intelligence Quotient (FSIQ) 101.4
(SD 18.3), Verbal Intelligence Quotient (VIQ) 107.2
(SD 18.6) and Performance Intelligence Quotient
(PIQ) 94.6 (SD 18.7) (VIQ > PIQ, p < 0.01).
Sixty-one individuals in the AS group had had no
further contact with the CNC after the diagnosis had
been made and information about results had been
shared with the family. A further 8 had had no contact
with the CNC for the past 5 years, but 31 had had one
or several contacts in the recent past (i.e., 2001 or
later). We have argued elsewhere (Cederlund & Gillberg,
2004) that the 100 individuals approached are fairly
representative of all males with AS, whose parents
applied for clinical assessment and help for them in the
late 1980s and throughout the 1990s.

group had been evaluated in childhood with the following results: Severe Mental Retardation (SMR,
IQ < 50) (n = 39), Mild Mental Retardation (MMR,
IQ 5069) (n = 31), Near Average Intelligence (NA,
IQ 7084) (n = 10) and Average Intelligence
(A, IQ 85114) (n = 4).

Autism Group

Autism Group

A group of 16 to 38-year-old males from a group with

autistic disorder (AD) diagnosed with autism (n = 62)
or atypical autism (n = 22, including 2 with disintegrative disorder) using the DSM-III (APA, 1980), and
DSM-III-R (APA, 1987) criteria, before 10 years of
age and followed-up with a similar protocol as the AS
group at the CNC 19992002 (Billstedt, Gillberg, &
Gillberg, 2005; Billstedt, 2006, personal communication), were used as a contrast group. These 84 individuals were all the males from a community-based
study of autism, who were approached for inclusion in
a longitudinal prospective follow-up study designed
and carried out by the last three authors. We consider
this autism group to be representative of all individuals
with autism diagnosed in the 1960s, 1970s and 1980s in
the community. The group was strikingly different
from the AS group in terms of IQ, but they still represented a reasonable contrast group vis-a`-vis our AS
group as regards their social impairment. The Autism

In the original autism group of 84 males, three (4%)

had died before follow-up. The causes of death were:
death in an accidental fire (boy with Fragile X syndrome and autism at 11 years of age); death in complications after heart surgery (boy with trisomy 13 and
a severe heart malformation and autism, age at death
unknown); unknown date and cause of death (boy with
atypical autism, age at death unknown). An additional
4 declined participation, leaving 77 for possible inclusion in the Autism study group. Of those who declined
participation two had MMR and two SMR.

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Attrition
AS Group
There was no mortality in the original AS group of 100
males. A letter of information about the AS study was
sent to all 100 individuals or their parents (in those
under 18 years of age). The study was referred to as a
follow-up study of Asperger syndrome. Of the 100
males with AS and/or their parents targeted for inclusion, 24 refused or failed all participation in the followup study. Nineteen of these declined participation over
the telephone, and three did so in writing. In two cases
there was no response in spite of reminders, and so we
have no clue as to who was responsible for the
failure to participate. (Of the 24 who refused, five had
never been informed about their condition. Parents
had never told their child about the diagnosis, and they
did not want for their sons to find out about it now. In
the other 19 cases, we only have limited information
about the reason for refusal/failure to participate).
There was no significant difference in mean FSIQ at
original diagnosis between the participating (n = 76),
and the non-participating (n = 24) AS groups.

Participants
AS Study Group
Of the 76 cases participating in the follow-up study,
seventy had had a complete DISCO interview performed, and these were included for further study,

J Autism Dev Disord (2008) 38:7285

since we intended to match clinical and DISCO-diagnoses. These 70 cases constituted the AS study
group.
Among these 70 cases there were 4 parents who
participated without their son (in one of these cases the
son was unaware of his condition), and test information
about intellectual ability at follow-up is missing for
these four individuals.
Autism Study Group
Of the 77 cases participating in the follow-up study, 75
had had a DISCO-interview completed, and of these,
seventy males fell in approximately the same age-range
as those 70 males who were chosen for the AS study
group. These 70 autism cases constituted the Autism
study group.
Mean Age
AS Study Group
Mean age in the AS study group at follow-up was
21.5 years (SD 4.4, range 16.033.9) years. Forty-eight
(69%) individuals in the AS study group, were 22 years
or younger at follow-up.

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diagnosis except for a small number of cases. About

50% of all AS cases had also received medical assessments including one or more of the following; karyotyping, neuroimaging, EEG, auditory brainstem
response examination, and a variety of urine, blood
and cerebrospinal fluid examinations. All the follow-up
assessments were administered, co-ordinated and carried out by the first four authors (authors one and two
in the AS-part, and authors three and four in the autism-part). The first author had not been involved at all,
and the second author had only been involved in a few
cases in the original AS diagnostic process. Authors
three and four had not been involved in the original
Autism diagnostic process. However, none of the
investigators were completely blind to the original
diagnoses, in their respective parts of the study. The
fifth author, who is the head of the Child and Adolescent Psychiatric Department at Goteborg University, initiated and supervised both studies, but did not
see the individuals at follow-up. All the follow-up
assessments in the AS-part took place at the CNC,
whereas those in the autism part were carried out at
the CNC or in the homes/workplaces of the participants. All four assessors have trained together in the
use of the DISCO and have been working together in
an autism spectrum disorder/child neuropsychiatric
team at the CNC for several years.

Autism Study Group

Mean age in the Autism study group was 24.5 years
(SD 5.4, 16.136.1 years) in the Autism study group. In
the Autism study group 30 males (43%), were 22 years
or younger at follow-up.
Original Diagnostic Assessments
AS and Autism groups
Both study groups had been assessed by experts in the
field of autism/AS, working at the CNC, with autism
spectrum instruments that were state-of-the-art at the
time of the diagnostic evaluations, e.g., in-depth clinical interview, the Handicaps, Behaviours, and Skills
Schedule (Wing 1980), the Childhood Autism Rating
Scale (Schopler, Reichler, DeVellis, & Daly, 1980), the
Autism Behaviour Checklist (Krug, Arick, & Almond,
1980) and the Asperger Syndrome Diagnostic Interview (ASDI) (Gillberg, Gillberg, Rastam, & Wentz,
2001). The Autism Diagnostic Interview (ADI)
(LeCouteur et al., 1989), and the Diagnostic Interview
for Social and Communication Disorders (DISCO)
(Wing, Leekam, Libby, Gould, & Larcombe, 2002),
were not available in Swedish at the time of original

Instruments Used in Study Groups at Follow-Up

at age 1636 Years1
Both groups were followed-up with in-depth examinations performed in 19992005. The following instruments were used:
Diagnostic Interview for Social and Communicative
Disorders (DISCO-10: A semi-structured interview
intended for interview with a person (often a parent),
who knew the individual well. The DISCO-10 has
excellent inter-rater and test-retest reliability, and is
highly valid for assigning diagnoses in the autism
spectrum (Wing et al., 2002). It also includes sections
on common associated problems in autism such as
psychiatric disorder, including psychosis, has a
developmental perspective, and is designed for use
throughout the lifespan (Wing et al., 2002). The DISCO was chosen in favour of the ADI, (LeCouteur
et al., 1989) because the latter was designed for use in
the diagnosis of classic autism, whereas the DISCO
includes a range of items intended to detect milder
forms of autism spectrum disorders. In addition, the
1
A number of other instruments were used, but results from
these will be presented in separate papers.

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DISCO has a developmental perspective and is

designed for use from early childhood into adult life
(Wing et al., 2002).
Wechsler Adult Intelligence Scale-Third edition
(WAIS-III) (Wechsler, 2003): This well-established
IQ-test, including Full Scale IQ (FSIQ), and subtests
for Verbal IQ (VIQ) and Performance IQ (PIQ), was
used with all participants in the AS study group. In the
Autism study group only a minority could be tested on
the Wechsler scales ((Wechsler Adult Intelligence
Scale-Revised (WAIS-R) (Wechsler, 1981) or
(Wechsler Intelligence Scale for Children-Third Edition (WISC-III) (Wechsler, 1999)), and the majority
were categorized in terms of IQ/DQ/SQ-band using
the Vineland Adaptive Behaviour Scales (see below).
Global Assessment of Functioning scale (GAF)
(APA, 1994): GAF yields scores from 0 to 100, where a
score of 70 indicates good or only mildly abnormal
psychosocial functioning. GAF was scored conjointly
by the first/second, and the third/fourth authors in all
cases in the respective studies. Most studies performed
on the GAF have found it to be a reliable and useful
instrument in measuring a persons psychosocial functioning, requiring only minor pre-scoring information
(e.g., Billstedt et al., 2005; Hilsenroth et al., 2000;
Startup, Jackson, & Bendix, 2002).
Vineland Adaptive Behavior Scales (VABS) (Sparrow, Balla, & Cicchetti, 1984): a semi-structured
interview with a parent/caregiver that offers a comprehensive assessment of adaptive behaviour. Cases
were categorized in DQ/SQ bands (Developmental
Quotient/Social Quotient) on the basis of the results on
the VABS. The VABS has been reported to be a valid
instrument in establishing the cognitive level for an
individual functioning at an IQ-level below 7075
(APA, 1994; Luckasson et al., 1992). The VABS has
also been widely used to map the overall functioning of
an individual in socialization, communication, and
daily living skills, regardless of IQ in order to be used
as a prognostic and intervention tool for habilitation
(Balboni, Pedrabissi, Molteni, & Villa, 2001; Gilotti,
Kenworthy, Sirian, Black, & Wagner, 2002; Rhea
et al., 2004).
A structured neuropsychiatric assessment, performed
by the first and fourth authors respectively.
Autism Spectrum Diagnoses at Follow-Up
Clinical Diagnosis
A clinical diagnosis of autistic disorder, atypical
autism, or AS, at follow-up of the AS study group
was made systematicallyincluding all available

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information, except the information generated at

DISCO-10 interviewusing the Gillberg (1991) criteria for AS (except the motor clumsiness criterion,
which was not universally fulfilled) or DSM-IV/ICD-10
criteria for autistic disorder/atypical autism. In the
Autism study group a clinical autism spectrum diagnosis was made using the same criteria as mentioned
above for the AS part of the study.
DISCO-10 diagnosis
Research diagnoses of autism spectrum disorders were
also made according to the algorithm of the DISCO-10
(DISCO-algorithm Gillberg criteria for AS and the
DISCO-algorithm DSM-IV/ICD-10 criteria for autism/
atypical autism). Diagnoses were generated by computer on the basis of the results obtained at the
DISCO-interview.
Criteria for Outcome in Both Study Groups
The criteria used for the classification of outcomes,
were similar to those employed in an earlier study of
autism in our centre (Gillberg & Steffenburg, 1987),
which was based on the outcome criteria published by
Lotter (Lotter, 1978). Reliability studiesto our
knowledgehave not been performed on the use of
these criteria. The classifications were based on all
available information (including the DISCO) at the
time of examination.
The Outcome Criteria Were
Good outcome: (a) being employed or in higher (age
and IQ-appropriate (normal)) education or vocational training, and, (b) if 23 years of age or older,
living independently, or if 22 years or younger, having
two or more friends/a steady relationship;
Fair outcome: either (a) or (b), but not both, under
good outcome;
Restricted outcome: neither (a) nor (b) under good
outcome, and not meeting criteria for a major psychiatric disorder other than autistic disorder or another
autism ASD. This category refers to a group of people
with the characteristics of poor outcome, but who have
been accepted by a group of peers or personnel to such
an extent that their handicaps are not so readily obvious;
Poor outcome: Obvious severe handicap, with either
of, no independent social progress or presence of a
major psychiatric disorder, but with some clear verbal
or non-verbal communicative skills;

J Autism Dev Disord (2008) 38:7285

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Very poor outcome: Obvious very severe handicap,

unable to lead any kind of independent existence, no
clear verbal or non-verbal communication.

Table 1 Clinical and DISCO-10 autism spectrum diagnoses

at follow-up
Clinical/DISCO diagnoses

AS (%)

Autism (%)

Statistical Methods Used

Clinical diagnosis
of AS
Clinical diagnosis of
autistic disorder
Clinical diagnosis of
atypical autism
No clinical diagnosis of
any autism spectrum
disorder
DISCO algorithm
diagnosis of AS
DISCO algorithm
diagnosis of autistic
disorder
DISCO algorithm
diagnosis of atypical
autism
No DISCO algorithm
diagnosis of an autism
spectrum disorder

52 (75%)

0 (5)** (0%) (7%)

7* (10%)

58 (83%)

3 (4%)

11 (16%)

8 (11%)

1 (1%)

59

11

55

56

10

14

Chi-square tests (with Yatess correction whenever

appropriate) were employed in comparison of group
frequencies.

Results
Diagnosis at Follow-Up and Diagnostic Stability
Over Time
AS Study Group
Fifty-nine individuals in the AS study group (84%) still
met clinical (Gillberg, 1991) diagnostic criteria for AS,
three (4%) met criteria for atypical autism, and
8 (12%) no longer met criteria for a clinical diagnosis
in the autism spectrum. Seven (10%) of the males
meeting clinical criteria for AS also met clinical criteria
for autistic disorder (DSM-IV) and were clinically
judged to better fit the latter diagnosis.
The DISCO-classification (Gillberg, DISCO-algorithm criteria) concurred with that of the clinical
assessment in 55 of the 59 (93%) cases with a clinical
diagnosis of AS at follow-up.
Of the eight males who did not meet full clinical
criteria for an ASD diagnosis at follow-up, six had a
diagnosis of atypical autism (DSM-IV/ICD-10), one
had a diagnosis of AS (Gillberg, 1991), and one did
not have any autism spectrum diagnosis (DSM-IV/
ICD-10) according to the DISCO-10 algorithm
(Table 1).
Autism Study Group
In the Autism study group, 43 out of 53 (81%) originally diagnosed AD still met clinical criteria for AD, 9
(17%) had a clinical diagnosis of atypical autism, and
one individual did not have a clinical autism spectrum
diagnosis at follow-up.
Only 2 out of 17 individuals with atypical autism at
original diagnosis fulfilled criteria for the same diagnosis at follow-up. All remaining 15 individuals fulfilled criteria for AD at follow-up. Fifty-four out of
58 (93%) with a clinical AD diagnosis at follow-up
also had a DISCO-10 diagnosis of AD and the other
four had atypical autism. Nine out of eleven individuals with a clinical diagnosis of atypical autism had

* 7 cases meeting both Gillberg and Gillberg criteria for AS and

DSM-IV criteria for autistic disorder, but clinically better fitting
autistic disorder
** 5 cases meeting Gillberg & Gillberg criteria for AS, but
clinically better fitting autistic disorder
In the DISCO part of this table more than one diagnosis was
possible, since for AS the Gillberg & Gillberg DISCO algorithm
criteria was used and for Autistic Disorder and Atypical autism
the DSM-IV/ICD-10 DISCO algorithm criteria was used

the same diagnosis according to DISCO-10 algorithm,

and the other two had an autism diagnosis according
to the same algorithm. Five males in the Autism
study group fulfilled criteria for an AS diagnosis
(Gillberg, 1991), but were clinically judged better to
fit a diagnosis of autism. The only male in the Autism
study group without a clinical diagnosis at follow-up
had an atypical autism diagnosis on the DISCO-10
(Table 1).
Intellectual Functioning at Follow-Up
AS Study Group
All individuals seen face-to-face at follow-up (n = 66)
were able to take a complete WAIS-III test. Mean
age at testing was 21.6 years (SD 4.5). Average FSIQ
was 103.0 (SD 14.8, range 66143). Two individuals
scored above IQ 130, and one below IQ 70. Mean
VIQ was 104.0 (SD 15.7) and PIQ 101.3 (SD 15.7)
(Table 2). Compared to at original diagnosis the
FSIQ was stable for the group as a whole, although
there were significant differences in FSIQ on an

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J Autism Dev Disord (2008) 38:7285

Table 2 IQ distribution in AS and autism groups at follow-up compared to at original diagnosis

IQ/DQ/SQ-band

AS original diagnosis
(n = 70) (%)

AS follow-up
(n = 66) (%)

Autism original diagnosis

(n = 70) (%)

Autism follow-up
(n = 70) (%)

49
5069
7084
85114
115129
130

0
0
15
41
10
4

0
1
4
45
14
2

33
24
10
3
0
0

50
15
2
3
0
0

(0%)
(0%)
(21%)
(59%)
(14%)
(6%)

(0%)
(2%)
(6%)
(68%)
(21%)
(3%)

(47%)
(35%)
(14%)
(4%)
(0%)
(0%)

(72%)
(21%)
(3%)
(4%)
(0%)
(0%)

p < 0.001 for IQ-level comparing AS group at original diagnosis (and at follow-up) versus autism group at original diagnosis and at
follow-up. The change in the AS group is without trend. In the autism group there is a downward shift in intellectual capacity that was
significant (p < 0.001)

individual basis between evaluation at original diagnosis and at follow-up. There was a significant
VIQ > PIQ difference (15 points) in 13 (19%) at
follow-up, compared to 31 (45%) at original diagnosis (p < 0.01). The gap between VIQ and PIQ for
the whole group had decreased from 11 IQ-points
at original diagnosis to less than 3 IQ-points at follow-up. The PIQ had gone up and the VIQ had
dropped somewhat, but changes were not statistically
significant. The subtests included in PIQ at original
diagnosis were not all identical to those used at follow-up. Matrix reasoning (MR) was included in this
score at follow-up instead of Object Assembly (OA).
The males scored much better on MR at follow-up
than at OA at original diagnosis. However, the result
on OA at follow-up was also better than OA at
original diagnosis, and the results on OA and MR at
follow-up were similar. The individuals who no
longer had a diagnosis in the autism spectrum did not
differ in intellectual capacity from the group who did
(FSIQ 101.9 (SD 12.3) compared to 103.1 (SD 15.2)).
Autism Study Group
In the Autism study group, Wechsler scale testing
(WAIS-R or WISC-III) was only possible in 16
individuals. The mean FSIQ in this small tested
group was 59.6 (SD 17.9, n = 16), VIQ 63.2 (SD 19.8,
n = 15) and PIQ 58.9 (SD 12.3, n = 15). The results
from the overall intellectual assessment of the Autism study group (including those tested on the
Wechsler scales) are presented in Table 2. Those
individuals who could not be tested on the Wechsler
scales were categorized according to results on the
VABS. The results in the Autism study group were
significantly lower than at original evaluation, and
contrasted to those of the AS group, in which mean
FSIQ had not changed over time (Table 2).

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Overall Outcome
AS study Group
Of the 70 males in the AS study group, 19 (27%) had
good outcome. Seven of these 19 no longer met clinical
criteria for AS diagnosis. Thirty-three (47%) had fair
outcome and, 16 (23%) had restricted outcome. Two
individuals (3%) in the AS group had poor outcome,
but no one had very poor outcome (Table 3). Lower
FSIQ contributed to poorer outcomes. Analysis of
covariance found age-difference to be non-significant
when overall outcome was related both to FSIQ and
VIQ. However, there was a significant difference between Good and Poor outcome (FSIQ & VIQ)
(p < 0.05), and between Good-Fair and RestrictedPoor ooutcome (FSIQ & VIQ) (p < 0.05) (Table 4).
When participants in the AS study group were divided into groups according to age at original diagnosis, good outcome was seen in 9/26 (35%) in the
youngest group (5.59.5 years at diagnosis), in 9/35
(26%) of the in-between-group (10.015.5 years at
diagnosis), and in 2/9 (22%) of the oldest group (16.0
24.5 years at diagnosis) (n.s.).
Table 3 Overall outcome categories
Outcome categories/Independent
living

AS

Good outcome
Fair outcome
Restricted outcome
Poor outcome
Very poor outcome
Independent living (23 years of
age or older)

19
33
16
2
0
14/22

Autism
(27%)
(47%)
(23%)
(3%)
(0%)
(64%)

0
5
12
14
39
3/40

(0%)
(7%)
(17%)
(20%)
(56%)
(8%)

p < 0.0001 for outcome AS group versus Autism group (Wilcoxon

rank sum)
p < 0.001 for independence AS group versus Autism group

J Autism Dev Disord (2008) 38:7285

79

Table 4 Outcome related to FSIQ and age in AS study group

Outcome AS

FSIQ (n = 66)

VIQ (n = 66)

Age at follow-up
(SD) years

Good 19 (27%)
Fair 33 (47%)
Restricted 16 (23%)
Poor 2 (3%)
Very poor 0 (0%)

107.8
105.0
97.4
82.0

109.3
104.3
98.6
92.0

21.5
20.7
23.5
18.5

(SD
(SD
(SD
(SD

14.3)
14.8) *
13.0)
4.2)

(SD
(SD
(SD
(SD

17.5)
14.2) *
15.1)
12.7)

(SD
(SD
(SD
(SD

3.7)
4.5)
4.8)
2.4)

* n = 29 (four males in this group did not participate in the follow-up)

Table 5 Outcome related to intelligence level and age in autism study group
Outcome Autism

Good n = 0
Fair n = 5 (7%)
Restricted n = 12 (17%)
Poor n = 14 (20%)
Very poor n = 39 (56%)

Intellectual level
A

NA

MMR

SMR

1
2
0
0

2
0
0
0

2
7
5
1

0
3
9
38*

Mean age at follow-up

(SD) years

26.1
25.9
25.5
23.5

(5.9)
(7.1)
(5.1)
(4.9)

* p < 0.001, intellectual level versus outcome (Chi square)

Autism Study Group

Of the 70 males in the Autism group no one had good
outcome. Five (7%) had fair outcome and, 12 (17%)
had restricted outcome. Fourteen individuals (20%)
had poor outcome, and 39 individuals (56%) had very
poor outcome (Table 3). Lower intellectual level contributed to poorer outcome (Table 5).
Education
AS Study Group
Eight of the AS males did university studies, and a
further two had a university degree (computer science, civil engineering). Thirty-three males in the AS
study group were in, or had currently finished, high
school. Only 21 of these 33 (64%) were, or had
been, following ordinary study programs. Three
males in the AS group were in special AS classrooms, four had special individually developed
study-programs, and five had some kind of special
education regularly. Two AS males were studying at
a Folk High School.2 Eight males with AS were (or
had been) in a school for adolescents with mild
2

Folk High School, is a Swedish form of school, with different

educational levels ranging from Swedish High School equivalent
to post High School education in specific fields mainly to acquire
specific non-academic skills.

learning disabilities. Three males with AS were in

special schools away from home, where their training
also included training in social and daily living skills.
Two males had finished school after nine years of
compulsory school.
Autism Study Group
None of the males in the Autism group did, or had
done, university studies. Six males in the Autism study
group were in, or had currently finished, high school (4
of whom had IQ >70). One of the males in the autism
group was studying at a Folk High School. Twentythree males with autism were (or had been) in a school
for adolescents with mild learning disabilities. An
additional 40 males had or had had their training in
special training schools.
Occupation
AS Study Group
Seven men in the AS group held ordinary jobs, and a
further six individuals had daily occupational activities in a group centre. Twelve males with AS (17%)
had no organized daily activity at all and were
dependent on social services and/or the Swedish
insurance system for their welfare.

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J Autism Dev Disord (2008) 38:7285

Autism Study Group

In the Autism group one man held an ordinary job, and
four individuals had daily occupational activities in a
group centre. Thirty-three males in the Autism study
group had regular individually tailored daily activities.
Thirteen males with (19%) had no organized daily
activity at all and were dependent on social services
and/or the Swedish insurance system for their welfare.
Independent living
AS Study Group
In the AS study group 14/22 (64%) of those who were
23 years, were living independently. In addition,
5 males with AS 22 years of age were living independently. Although living away from their parents,
they were all dependent upon them for support. Three
males with AS were living in a long-term relationship,
and a further 10 had had relationships for varying
periods of time in the past.

normal or near normal functioning (Table 6). However, six of these 12 men no longer met criteria for an
autism spectrum diagnosis. Of the males, who were still
regarded clinically to have sufficient impairment from
their symptoms to warrant a clinical diagnosis of AS,
five had a GAF-score of 70, and one had a GAF-score
of 72.
There was no difference at follow-up in GAF-scores
between the AS-age-at-diagnosis-groups, 59 years
59.5 (SD 7.1, n = 26), 1015 years 58.4 (SD 9.7, n = 35)
and 16+ years 59.0 (SD 14.3, n = 9). The individuals
with AS, who had been followed-up at the CNC on a
fairly regular basis after diagnosis (n = 29) had a mean
GAF score of 57.6 (SD 6.8), similar to those who had
not been followed there (n = 41) 59.8 (SD 10.8).
Autism Study Group
The mean GAF-score was 22.2 (SD 16.5 range 467,
p < 0.001) in the Autism study group. No individual in
the Autism study group had a GAF score of 70 or
above (Table 6).

Autism Study Group

Involvement with the Police and the Law

Of the males who were 23 years in the Autism group

(n = 40), only 3 males (8%), one each with IQ-level A,
NA and MMR), were living independently. Although
living independently, they were all in need of their
parents for support. One male with Autism was living
in a long-term relationship, and yet another one had
recently had a relationship for a longer duration.

AS Study Group

GAF-Scores

The vast majority in the AS study group were considered very lawabiding. However, according to parent
report, seven males (10%) with AS had been involved
with police and the law for different reasons, (fraud
(1), harassment of police officer (1), harassment of
young woman (1), stealing (1), assault (1), sexual abuse
(1), and unknown in 1 case).

AS Study Group

Autism Study Group

The mean GAF-score for the AS study group was 58.9

(SD 9.4 range 3582). Twelve males (17%) in the AS
group, had a GAF score of 70 or above, indicating

In the Autism study group there were no reports by

parents or other informants concerning involvement
with police or the law.

Table 6 GAF-scores in relation to intellectual ability

GAF-scores

AS

FSIQ (SD)

Autism

Intellectual ability

Mean GAF-score (SD)

GAF-score 70GAF-score 5069
GAF-score 3149
GAF-score -30

58.9 (9.4)
12
51
7
0

109.7 (15.2)
102.7 (14.2) *
91.9 (13.7)

22.2 (16.5)
0
8
13
49

A (3) NA (2) MMR (3)

MMR (5) SMR (8)
MMR (4) SMR (45)

* n = 47
p < 0.001 for mean GAF-scores AS versus Autism group
p < 0.001 for intellectual ability related to GAF score

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Psychotic Disorder
AS Study Group
Three individuals in the AS study group had been
diagnosed as suffering from psychosis by independent
psychiatrists. One of these males had received a
diagnosis of bipolar disorder, and there was suspicion
of such disorder in at least one further case. No individual had been diagnosed with schizophrenia in the
AS group. All three individuals with a psychosis diagnosis in the AS group were on current anti-psychotic
medication. In terms of intellectual ability two of them
(the third one was not assessed) had had significant
drop (20 IQ-points) in their FSIQ as measured on the
WAIS-III. However, all 3 individuals with psychosis
were reported to have shown a significant drop in
intellectual ability between original diagnosis and follow-up.
Autism Study Group
In the Autism study group four individuals had been
diagnosed as suffering from psychosis, and in none of
those cases had a diagnosis of bipolar disorder been
made. No individual had been diagnosed with schizophrenia in the Autism group. Two out of four individuals with a psychosis diagnosis in the Autism group
were on current anti-psychotic medication.

Discussion
This, to our knowledge, is the largest prospective
comparative follow-up study ever published of a cohort
of individuals with AS, and autism, followed over a
period of more than 5 years. We believe that the
individuals included are representative of AS, and
autism/atypical autism, as diagnosed 10 years ago or
more. The results are of particular interest, given that
most previous studies have related to smaller, and/or
possibly highly selected samples.
Were our hypotheses supported by the findings?
The diagnosis of AS was still clinically valid in the
vast majority of AS cases (84%), but 11 individuals
did not meet clinical criteria for this particular diagnosis at follow-up. Three of these 11 had a clinical
diagnosis of atypical autism, but eight did not have
sufficient clinical impairment to warrant a clinical
diagnosis of an autism spectrum disorder. However,
this was not equivalent to lack of impairment from
autistic type problems. In the Autism study group
81% originally diagnosed with AD still met clinical

81

criteria for AD at follow-up. All the remaining males

but one had a clinical diagnosis of atypical autism. Of
the 17 individuals with atypical autism at original
diagnosis, 15 fulfilled criteria for AD at follow-up.
The DISCO-10 identified the vast majority of individuals in both study groups in the same categories as
the clinicians.
Restricted and poor outcome affected more
AS individuals (26%) than expected, considering the
average intellectual level for this group as a whole, and
the outcome criteria used. However, the Autism study
group had a much worse outcome, with the vast
majority of individuals (76%) belonging in the poor or
very poor outcome groups. The intellectual level was
much lower in the Autism study group, where only five
(7%) individuals had a normal intellectual ability at
follow-up.
There was a tendency for FSIQ, and particularly,
as hypothesized, for VIQ to be correlated with better
outcome within the AS group, even though those
with better outcomes had not been followed up for
as long as those with restricted outcome making
definite conclusions about ultimate prognosis somewhat less certain. In contrast, in the Autism study
group the individuals in the very poor outcome
group were the youngest (i.e. mean age was lowest in
this group).
There was no decline in FSIQ in the AS group over
time. However, the difference between verbal and nonverbal ability of 15 IQ-points or more that applied in
45% at original diagnosis was now present only in 19%
of the individuals. Performance results tended to improve over time and the mean VIQ > PIQ difference
of 11 IQ-points or more that was present at original
diagnosis was no longer at hand at follow-up. This
might reflect an improvement in visual-spatial ability
over time, but the subtests included in the Perceptual
Organization index had changed over time, meaning
that definite conclusions in this respect will have to
await further studies. The stable overall IQ in the AS
group contrasted with the decline of intellectual ability
in the Autism study group, where there had been a
considerable drop in intellectual ability over the years.
A small, but not insignificant, group of individuals in
both the AS and Autism study groups had been diagnosed by independent psychiatrists as having psychosis. Schizophrenia had not been diagnosed in a
single individual, and even though cases of this condition might well appear with time, it seems clear that
neither AS, nor autism is associated with a much increased risk for schizophrenia in early adult life. At
least two of the three males in the AS group, who had
been diagnosed with psychosis had had severe decline

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J Autism Dev Disord (2008) 38:7285

in intellectual functioning between original diagnosis

and follow-up (the third male was not tested at followup). They all fulfilled criteria for AS at follow-up.
There was a (non-significant) young age at diagnosis
by better outcome trend in the AS group. Given that
young age at diagnosis probably also indicates a more
difficult child, this trend would seem to indicate that an
early diagnosis in itself possibly would contribute to a
better outcome. However no definite conclusions can
be drawn in this respect on the basis of the current
results.
Seven individuals with AS (10%) were reported to
have been involved with the police and the law for
various acts of crime. In this age group in Sweden, a
rate of 10% criminality is not surprisingly high (National Council for Crime Prevention, Sweden, 2005).
Nevertheless, the nature of the acts of crime performed
by the young men with AS was rather severe in
several cases, and visualized difficulties with perspective-taking, and difficulties in appreciating the consequences of their actions, which was also reported in an
earlier study (Murphy, 2003).
In summary, we found a diagnosis in the autism
spectrum to be stable over time in the vast majority of
cases. Outcome in the AS study group was worse than
expected, taken the level of intelligence and outcome
criteria used into account. However, it was dramatically better than in the Autism study group. The better
outcome could probably be attributed to the much
higher FSIQ in the former group. We also found FSIQ
to be stable over time in the AS study group, which was
in contrast to the Autism study group where there was
an intellectual decline over time. In a small AS subgroup there was psychotic disorder which, in turn, was
associated with decline in intellectual ability, and
hence in outcome. Criminal acts were not reported at
very high rates, but the acts of crime were sometimes
odd and reflecting the lack of common sense that is one
of the key issues in AS.

to recruit an Autism study group matched for IQ,

particularly given speculation (e.g., Gillberg, 1998) that
the main difference across cases clinically diagnosed as
AS and autism is the much higher IQ in the former
group, and that there are no clinically diagnosed cases
of autism who have IQ in the superior range. We believe that, as regards the social deficits, the two groups
were roughly comparable in childhood and/or adolescence, and that they therefore constituted reasonable
contrast groups for the purpose of follow-up of psychosocial adjustment and general outcome in adult life.

Limitations

1.

Of the 100 males approached for inclusion in the AS

follow-up study, only 76 participated, and 70 of these
were included in the present study. We know that the
non-participants did not differ from the participants in
terms of overall intelligence and there are no obvious
indications that the examined group differs in any
major way from the larger group originally targeted.
The autism contrast group may not be regarded as
ideal because of its much lower IQ. Nevertheless, it
would be unrealistic (and, clinically, probably impossible)

123

Conclusions
Males with AS diagnosed in childhoodyoung adult
age have outcomes that are very much better than
those found in males diagnosed in childhood as suffering from autism/atypical autism. Nevertheless, given
their good intellectual capacity, the outcomes must be
regarded as sub-optimal. Medical, social and occupational services must find ways to achieve more individually adjusted solutions so as to be more successful
in meeting the needs of individuals with autism spectrum disorders.
Acknowledgments This study was supported by the Linnea &
Josef Carlsson Foundation, the Wilhelm and Martina Lundgren
Foundation, the Soderstrom-Konigska Foundation, the Swedish
Autism Foundation, the Goteborg Medical Society, the Petter
Silverskiold Memorial Foundation, grants from the State under
the ALF (LUA) agreement, and by a grant from the Swedish
Scientific Council (MRC grant: 20034581) for professor
Gillberg. Both studies were approved by the Medical Ethical
Committee of Goteborg University.

Appendix A: Diagnostic Criteria for Asperger

Syndrome
Gillberg and Gillberg (1989) diagnostic criteria elaborated (Gillberg 1991)
Social impairment (extreme egocentricity) (at least
two of the following)

(a) inability to interact with peers

(b) lack of desire to interact with peers
(c) lack of appreciation of social cues
(d) socially and emotionally inappropriate behaviour.
2.

Narrow interest (at least one of the following)

(a) exclusion of other activities

(b) repetitive adherence
(c) more rote than meaning.

J Autism Dev Disord (2008) 38:7285

3.

83

Repetitive routines (at least one of the following)

(a) on self, in aspects

(b) on others.
4.

Speech and language peculiarities (at least three of

the following)

(a) delayed development

(b) superficially perfect expressive language
(c) formal pedantic language
(d) odd prosody, peculiar voice characteristics
(e) impairment of comprehension, including misinterpretations of literal/implied meanings.
5.

Non-verbal communication problems (at least one

of the following):

(a) limited use of gestures

(b) clumsy/gauche body language
(c) limited facial expression
(d) inappropriate expression
(e) peculiar, stiff gaze.
6.
(a)

Motor clumsiness
poor performance
examination.

apparently inflexible adherence to specific, nonfunctional routines or rituals.

(c) stereotyped and repetitive motor-mannerisms
(hand- or finger-flapping or twisting or complex
whole-body movements)
(d) persistent preoccupation with parts of objects
The disturbance causes clinically significant impairment in social, occupational, or other important areas
of functioning:
The is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).
There is no clinically significant delay in cognitive
development or in the development of age-appropriate
self-help skills, adaptive behaviour (other than in social
interaction), and curiosity about the environment in
childhood.
Criteria are not met for another Pervasive Developmental Disorder or Schizophrenia.

References
on

neuro-developmental

Appendix B: DSM-IV (APA, 1994) Criteria

for Autistic Disorder
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(a)

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least one of the following:
(a)

(b)

encompassing preoccupation with one or more

stereotyped and restricted patterns of interest
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