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DOI 10.1007/s10803-007-0364-6
ORIGINAL PAPER
Abstract Prospective follow-up study of 70 males with Hans Asperger (Asperger, 1944), did not appear as
Asperger syndrome (AS), and 70 males with autism a diagnostic entity until the early 1980s after being
more than 5 years after original diagnosis. Instruments reintroduced by Lorna Wing (Wing, 1981). The first set
used at follow-up included overall clinical assessment, of diagnostic criteria were formulated by Gillberg and
the Diagnostic Interview for Social and Communica- Gillberg (1988/1989). The Diagnostic and Statistical
tion Disorders, Wechsler Intelligence Scales, Vineland Manual of Mental Disorders (DSM-IV), and the ICD-
Adaptive Behavior Scales, and Global Assessment of 10 classification of Mental and Behavioural Disorders,
Functioning Scale. Specific outcome criteria were used. did not publish diagnostic criteria for AS until well into
Outcome in AS was good in 27% of cases. However, the 1990s (APA, 1994, WHO, 1993). These criteria
26% had a very restricted life, with no occupation/ have been widely criticized (e.g., Leekam, Libby,
activity and no friends. Outcome in the autism group Wing, Gould, & Gillberg, 2000; Miller & Ozonoff,
was significantly worse. Males with AS had worse out- 1997), and there is still no consensus as to how AS
comes than expected given normal to high IQ. How- should best be delineated. The Gillberǵs six criteria for
ever, outcome was considerably better than for the making the diagnosis of AS are based on Hans
comparison group of individuals with autism. Aspergeŕs original publication and require major
problems with social interaction (e.g., impairing diffi-
Keywords Asperger syndrome Autism Follow-up culties making friends and understanding social cues),
Intellectual ability Outcome DISCO narrow interests, repetitive routines, speech and lan-
guage (e.g., odd ways of using expressive language, odd
speech, intonation problems, and difficulties under-
Introduction standing others), non-verbal communication problems,
and motor clumsiness. At least 9 symptoms are re-
Asperger syndrome (AS), described as ‘‘autistic psy- quired for a diagnosis of AS. The DSM-IV criteria for
chopathy’’ already in 1944 by the Austrian paediatrician AS specify impairments in social interaction (defined
as for autism), restricted, repetitive, stereotyped
behaviour (defined as for autism), and absence of
M. Cederlund (&) B. Hagberg E. Billstedt clinically significant delay in language or cognitive
I. C. Gillberg C. Gillberg development, including self-help skills, adaptive
Department of Child and Adolescent Psychiatry, Institute of
behaviour and curiosity about the environment, in the
Neuroscience and Physiology, Göteborg University,
GöteborgKungsgatan 12, 411 19, Sweden first 3 years of life (see Appendices). Only 3 symptoms
e-mail: mats.cederlund@vgregion.se are required for a diagnosis of AS.
Over the years, there has been much discussion
M. Cederlund B. Hagberg E. Billstedt
about whether or not AS and so-called High Func-
I. C. Gillberg C. Gillberg
Queen Silviás Child- and Adolescent Hospital, tioning Autism (HFA) are separate, similar or identi-
Otterhällegatan, 12 A, 411 18 Göteborg, Sweden cal conditions (Gillberg, 1998; Mesibov, Kunce, &
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J Autism Dev Disord (2008) 38:72–85 73
Schopler, 1998; Wing & Potter, 2002). Although high criteria formulated by Gillberg and Gillberg (1989) and
verbal intelligence—including better verbal than per- Gillberg (1991), and of autistic disorder and atypical
formance skills on the Wechsler scales—and earlier autism as diagnosed according to the DSM-IV. An-
language development have been noted to be more other aim was to estimate the frequency of severe
common in people with AS than in classic autism, no psychiatric disorder (psychosis) in the investigated
research has so far been able to show clear-cut differ- groups, given earlier reports of a high frequency of
ences between people diagnosed with HFA as com- such disorders within the autism spectrum (e.g., Wozniak
pared with those who have been given a diagnosis of et al., 1997; Wolff, 1995). Finally, there has been con-
AS (Eisenmajeret al., 1998; Gilchrist et al., 2001; troversy about the rate of criminal offence within the
Howlin, 2003). AS/HFA group particularly after the publication of
Very few reports on the outcome of AS have been reports documenting a high rate of these diagnoses
published. They have referred to small or highly se- among highly selected samples of offending psychiatric
lected clinical case samples without comparison groups patients (e.g., Siponmaa, Kristiansson, Jonsson, Nydén,
and have reported low levels of employment and social & Gillberg, 2001; Scragg & Shah, 1994), and so our
functioning (Green, Gilchrist, Burton, & Cox, 2000; third aim was to examine the prevalence of such of-
Tantam, 1991; Tsatsanis, 2003; Wing, 1981). In this fence committed by individuals with AS and autism in
study psychosocial functioning includes aspects of early adult life.
employment/studying, relationship to others, indepen- Some individuals with a diagnosis of Asperger syn-
dent living, and absence of psychiatric problems. drome in childhood appear to do well in adult life, and
Intellectual decline over time, as measured by the this has led some people to question the appropriate-
Wechsler scales, was reported in one study of the ness of making the diagnosis at all. Could the diagnosis
intermediate term outcome of AS (Nydén, Billstedt, of Asperger syndrome actually contribute to problems
Hjelmqvist, & Gillberg, 2001), but has not been ob- (such as the supposed stigma of having a diagnosis at
served in later studies. A tendency towards closing of all) in certain cases? We consider that, if diagnoses are
the gap between superior verbal and inferior non-ver- only made in individuals who have clinical impairment,
bal skills over time has been observed (Szatmari, 2003, this would not be an issue. In the present study we used
personal communication). Recent studies of the short- the Global Assessment of Functioning (GAF) scale to
term outcome of AS have suggested a substantially score psychosocial functioning, so as to determine
better outcome than in autism, which may have been whether or not an individual, who fulfils symptom cri-
due to earlier and more effective interventions, or to teria for AS should also be given the diagnosis of AS.
other factors (Starr, Szatmari, Bryson, & Zweigenbaum, The following hypotheses were tested: (i) diagnoses
2003; Szatmari, Bryson, Boyle, Streiner, & Duku, 2003; within the autism spectrum are stable over time, (ii)
Tsatsanis, 2003). AS has a psychosocially better outcome than autism,
Outcome in classic cases of autism has been inves- (iii) better outcome in AS is attributable to higher IQ,
tigated in a number of studies in the past. The rate of (iv) intellectual ability declines over time in these dis-
poor or very poor psychosocial outcome (isolated life orders, (v) individuals with higher verbal IQ have the
with high degree of dependency on others) has been best psychosocial outcome, (vi) those with an earlier
around 50% (e.g., Gillberg & Steffenburg, 1987; diagnosis have fewer problems in early adult life, (vii)
Howlin, Mawhood, & Rutter, 2000; Howlin, Goode, there is a higher frequency of severe psychiatric dis-
Hutton, and Rutter, 2004), and IQ has decreased over orders (psychosis), than in the general population,
time (Billstedt, Gillberg, & Gillberg, 2005). (viii) involvement with the police and the law is at the
The present study is probably the first ever to same rate as in the general population.
present a long-term perspective on the natural out-
come of a reasonably large group of males with AS.
The background and associated factors of the AS Methods
group have been outlined in two previous publications
(Cederlund & Gillberg, 2004; Gillberg & Cederlund, AS group
2005). The AS group was contrasted with a similarly
aged group of males with classic autism/atypical autism One-hundred males with AS, 16–36 years old, diag-
followed up using identical/similar instruments. nosed at the Child Neuropsychiatric Clinic (CNC) in
One aim of the study was to examine the diagnostic Göteborg, Sweden, in the years 1985–1999, were ap-
stability over time within the autism spectrum, in this proached for inclusion in the follow-up study. They
case the stability of AS as diagnosed on the basis of the were born 1967–1988, and had been diagnosed with AS
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at ages 5.5–24.5 years. Mean age at diagnosis was group had been evaluated in childhood with the fol-
11.3 years (SD 3.8 years), which is in keeping with lowing results: Severe Mental Retardation (SMR,
previous findings (Howlin & Ashgarian, 1999). They all IQ < 50) (n = 39), Mild Mental Retardation (MMR,
fulfilled the Gillberg and Gillberg criteria for AS IQ 50–69) (n = 31), Near Average Intelligence (NA,
(Gillberg 1991; Gillberg & Gillberg, 1989), which had IQ 70–84) (n = 10) and Average Intelligence
been in use at the clinic since 1985. (A, IQ 85–114) (n = 4).
Criteria for inclusion in the follow-up study were (i)
normal intelligence (IQ > 70) at diagnosis on the Attrition
Wechsler scales (WISC-R (n = 40), WISC-III (n = 52)
or WAIS-R (n = 8)), (ii) AS diagnosis made ‡5 years AS Group
prior to follow-up, and (iii) age ‡16 years at the census
date 30/06/2004. We included males only, since no There was no mortality in the original AS group of 100
more than 7 females meeting inclusion criteria were males. A letter of information about the AS study was
found. The AS group had been assessed on the sent to all 100 individuals or their parents (in those
Wechsler scales (Wechsler, 1974, 1992a, 1992b) at under 18 years of age). The study was referred to as ‘‘a
original diagnosis, and had had the following mean follow-up study of Asperger syndrome’’. Of the 100
results: Full Scale Intelligence Quotient (FSIQ) 101.4 males with AS and/or their parents targeted for inclu-
(SD 18.3), Verbal Intelligence Quotient (VIQ) 107.2 sion, 24 refused or failed all participation in the follow-
(SD 18.6) and Performance Intelligence Quotient up study. Nineteen of these declined participation over
(PIQ) 94.6 (SD 18.7) (VIQ > PIQ, p < 0.01). the telephone, and three did so in writing. In two cases
Sixty-one individuals in the AS group had had no there was no response in spite of reminders, and so we
further contact with the CNC after the diagnosis had have no clue as to who was ‘‘responsible’’ for the
been made and information about results had been failure to participate. (Of the 24 who refused, five had
shared with the family. A further 8 had had no contact never been informed about their condition. Parents
with the CNC for the past 5 years, but 31 had had one had never told their child about the diagnosis, and they
or several contacts in the recent past (i.e., 2001 or did not want for their sons to find out about it now. In
later). We have argued elsewhere (Cederlund & Gillberg, the other 19 cases, we only have limited information
2004) that the 100 individuals approached are fairly about the reason for refusal/failure to participate).
representative of all males with AS, whose parents There was no significant difference in mean FSIQ at
applied for clinical assessment and help for them in the original diagnosis between the participating (n = 76),
late 1980s and throughout the 1990s. and the non-participating (n = 24) AS groups.
A group of 16 to 38-year-old males from a group with In the original autism group of 84 males, three (4%)
autistic disorder (AD) diagnosed with autism (n = 62) had died before follow-up. The causes of death were:
or atypical autism (n = 22, including 2 with disinte- death in an accidental fire (boy with Fragile X syn-
grative disorder) using the DSM-III (APA, 1980), and drome and autism at 11 years of age); death in com-
DSM-III-R (APA, 1987) criteria, before 10 years of plications after heart surgery (boy with trisomy 13 and
age and followed-up with a similar protocol as the AS a severe heart malformation and autism, age at death
group at the CNC 1999–2002 (Billstedt, Gillberg, & unknown); unknown date and cause of death (boy with
Gillberg, 2005; Billstedt, 2006, personal communica- atypical autism, age at death unknown). An additional
tion), were used as a contrast group. These 84 indi- 4 declined participation, leaving 77 for possible inclu-
viduals were all the males from a community-based sion in the Autism study group. Of those who declined
study of autism, who were approached for inclusion in participation two had MMR and two SMR.
a longitudinal prospective follow-up study designed
and carried out by the last three authors. We consider Participants
this autism group to be representative of all individuals
with autism diagnosed in the 1960s, 1970s and 1980s in AS Study Group
the community. The group was strikingly different
from the AS group in terms of IQ, but they still rep- Of the 76 cases participating in the follow-up study,
resented a reasonable contrast group vis-à-vis our AS seventy had had a complete DISCO interview per-
group as regards their social impairment. The Autism formed, and these were included for further study,
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since we intended to match clinical and DISCO-diag- diagnosis except for a small number of cases. About
noses. These 70 cases constituted the ‘‘AS study 50% of all AS cases had also received medical assess-
group’’. ments including one or more of the following; karyo-
Among these 70 cases there were 4 parents who typing, neuroimaging, EEG, auditory brainstem
participated without their son (in one of these cases the response examination, and a variety of urine, blood
son was unaware of his condition), and test information and cerebrospinal fluid examinations. All the follow-up
about intellectual ability at follow-up is missing for assessments were administered, co-ordinated and car-
these four individuals. ried out by the first four authors (authors one and two
in the AS-part, and authors three and four in the aut-
Autism Study Group ism-part). The first author had not been involved at all,
and the second author had only been involved in a few
Of the 77 cases participating in the follow-up study, 75 cases in the original AS diagnostic process. Authors
had had a DISCO-interview completed, and of these, three and four had not been involved in the original
seventy males fell in approximately the same age-range Autism diagnostic process. However, none of the
as those 70 males who were chosen for the ‘‘AS study investigators were completely ‘‘blind’’ to the original
group’’. These 70 autism cases constituted the ‘‘Autism diagnoses, in their respective parts of the study. The
study group’’. fifth author, who is the head of the Child and Ado-
lescent Psychiatric Department at Göteborg Univer-
Mean Age sity, initiated and supervised both studies, but did not
see the individuals at follow-up. All the follow-up
AS Study Group assessments in the AS-part took place at the CNC,
whereas those in the autism part were carried out at
Mean age in the AS study group at follow-up was the CNC or in the homes/workplaces of the partici-
21.5 years (SD 4.4, range 16.0–33.9) years. Forty-eight pants. All four assessors have trained together in the
(69%) individuals in the AS study group, were 22 years use of the DISCO and have been working together in
or younger at follow-up. an autism spectrum disorder/child neuropsychiatric
team at the CNC for several years.
Autism Study Group
Instruments Used in Study Groups at Follow-Up
Mean age in the Autism study group was 24.5 years at age 16–36 Years1
(SD 5.4, 16.1–36.1 years) in the Autism study group. In
the Autism study group 30 males (43%), were 22 years Both groups were followed-up with in-depth examin-
or younger at follow-up. ations performed in 1999–2005. The following instru-
ments were used:
Original Diagnostic Assessments Diagnostic Interview for Social and Communicative
Disorders (DISCO-10: A semi-structured interview
AS and Autism groups intended for interview with a person (often a parent),
who knew the individual well. The DISCO-10 has
Both study groups had been assessed by experts in the excellent inter-rater and test-retest reliability, and is
field of autism/AS, working at the CNC, with ‘‘autism highly valid for assigning diagnoses in the autism
spectrum instruments’’ that were state-of-the-art at the spectrum (Wing et al., 2002). It also includes sections
time of the diagnostic evaluations, e.g., in-depth clini- on common associated problems in autism such as
cal interview, the Handicaps, Behaviours, and Skills psychiatric disorder, including ‘‘psychosis’’, has a
Schedule (Wing 1980), the Childhood Autism Rating developmental perspective, and is designed for use
Scale (Schopler, Reichler, DeVellis, & Daly, 1980), the throughout the lifespan (Wing et al., 2002). The DIS-
Autism Behaviour Checklist (Krug, Arick, & Almond, CO was chosen in favour of the ADI, (LeCouteur
1980) and the Asperger Syndrome Diagnostic Inter- et al., 1989) because the latter was designed for use in
view (ASDI) (Gillberg, Gillberg, Rastam, & Wentz, the diagnosis of classic autism, whereas the DISCO
2001). The Autism Diagnostic Interview (ADI) includes a range of items intended to detect milder
(LeCouteur et al., 1989), and the Diagnostic Interview forms of autism spectrum disorders. In addition, the
for Social and Communication Disorders (DISCO)
(Wing, Leekam, Libby, Gould, & Larcombe, 2002), 1
A number of other instruments were used, but results from
were not available in Swedish at the time of original these will be presented in separate papers.
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DISCO has a developmental perspective and is information, except the information generated at
designed for use from early childhood into adult life DISCO-10 interview—using the Gillberg (1991) cri-
(Wing et al., 2002). teria for AS (except the motor clumsiness criterion,
Wechsler Adult Intelligence Scale-Third edition which was not universally fulfilled) or DSM-IV/ICD-10
(WAIS-III) (Wechsler, 2003): This well-established criteria for autistic disorder/atypical autism. In the
IQ-test, including Full Scale IQ (FSIQ), and subtests Autism study group a clinical autism spectrum diag-
for Verbal IQ (VIQ) and Performance IQ (PIQ), was nosis was made using the same criteria as mentioned
used with all participants in the AS study group. In the above for the AS part of the study.
Autism study group only a minority could be tested on
the Wechsler scales ((Wechsler Adult Intelligence DISCO-10 diagnosis
Scale-Revised (WAIS-R) (Wechsler, 1981) or
(Wechsler Intelligence Scale for Children-Third Edi- Research diagnoses of autism spectrum disorders were
tion (WISC-III) (Wechsler, 1999)), and the majority also made according to the algorithm of the DISCO-10
were categorized in terms of IQ/DQ/SQ-band using (DISCO-algorithm Gillberg criteria for AS and the
the Vineland Adaptive Behaviour Scales (see below). DISCO-algorithm DSM-IV/ICD-10 criteria for autism/
Global Assessment of Functioning scale (GAF) atypical autism). Diagnoses were generated by com-
(APA, 1994): GAF yields scores from 0 to 100, where a puter on the basis of the results obtained at the
score of ‡70 indicates good or only mildly abnormal DISCO-interview.
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 Criteria for Outcome in Both Study Groups
on the GAF have found it to be a reliable and useful
instrument in measuring a persons psychosocial func- The criteria used for the classification of outcomes,
tioning, requiring only minor pre-scoring information were similar to those employed in an earlier study of
(e.g., Billstedt et al., 2005; Hilsenroth et al., 2000; autism in our centre (Gillberg & Steffenburg, 1987),
Startup, Jackson, & Bendix, 2002). which was based on the outcome criteria published by
Vineland Adaptive Behavior Scales (VABS) (Spar- Lotter (Lotter, 1978). Reliability studies—to our
row, Balla, & Cicchetti, 1984): a semi-structured knowledge—have not been performed on the use of
interview with a parent/caregiver that offers a com- these criteria. The classifications were based on all
prehensive assessment of adaptive behaviour. Cases available information (including the DISCO) at the
were categorized in DQ/SQ bands (Developmental time of examination.
Quotient/Social Quotient) on the basis of the results on
the VABS. The VABS has been reported to be a valid The Outcome Criteria Were
instrument in establishing the cognitive level for an
individual functioning at an IQ-level below 70–75 Good outcome: (a) being employed or in ‘‘higher’’ (age
(APA, 1994; Luckasson et al., 1992). The VABS has and IQ-appropriate (‘‘normal’’)) education or voca-
also been widely used to map the overall functioning of tional training, and, (b) if 23 years of age or older,
an individual in socialization, communication, and living independently, or if 22 years or younger, having
daily living skills, regardless of IQ in order to be used two or more friends/a steady relationship;
as a prognostic and intervention tool for habilitation Fair outcome: either (a) or (b), but not both, under
(Balboni, Pedrabissi, Molteni, & Villa, 2001; Gilotti, good outcome;
Kenworthy, Sirian, Black, & Wagner, 2002; Rhea Restricted outcome: neither (a) nor (b) under good
et al., 2004). outcome, and not meeting criteria for a major psychi-
A structured neuropsychiatric assessment, performed atric disorder other than autistic disorder or another
by the first and fourth authors respectively. autism ASD. This category refers to a group of people
with the characteristics of poor outcome, but who have
Autism Spectrum Diagnoses at Follow-Up been accepted by a group of peers or personnel to such
an extent that their handicaps are not so readily obvi-
Clinical Diagnosis ous;
Poor outcome: Obvious severe handicap, with either
A clinical diagnosis of autistic disorder, atypical of, no independent social progress or presence of a
autism, or AS, at follow-up of the AS study group major psychiatric disorder, but with some clear verbal
was made systematically—including all available or non-verbal communicative skills;
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Very poor outcome: Obvious very severe handicap, Table 1 Clinical and DISCO-10 autism spectrum diagnoses
unable to lead any kind of independent existence, no at follow-up
clear verbal or non-verbal communication. Clinical/DISCO diagnoses AS (%) Autism (%)
In the Autism study group, 43 out of 53 (81%) origi- Intellectual Functioning at Follow-Up
nally diagnosed AD still met clinical criteria for AD, 9
(17%) had a clinical diagnosis of atypical autism, and AS Study Group
one individual did not have a clinical autism spectrum
diagnosis at follow-up. All individuals seen face-to-face at follow-up (n = 66)
Only 2 out of 17 individuals with atypical autism at were able to take a complete WAIS-III test. Mean
original diagnosis fulfilled criteria for the same diag- age at testing was 21.6 years (SD 4.5). Average FSIQ
nosis at follow-up. All remaining 15 individuals ful- was 103.0 (SD 14.8, range 66–143). Two individuals
filled criteria for AD at follow-up. Fifty-four out of scored above IQ 130, and one below IQ 70. Mean
58 (93%) with a clinical AD diagnosis at follow-up VIQ was 104.0 (SD 15.7) and PIQ 101.3 (SD 15.7)
also had a DISCO-10 diagnosis of AD and the other (Table 2). Compared to at original diagnosis the
four had atypical autism. Nine out of eleven indi- FSIQ was stable for the group as a whole, although
viduals with a clinical diagnosis of atypical autism had there were significant differences in FSIQ on an
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Good 19 (27%) 107.8 (SD 14.3) 109.3 (SD 17.5) 21.5 (SD 3.7)
Fair 33 (47%) 105.0 (SD 14.8) * 104.3 (SD 14.2) * 20.7 (SD 4.5)
Restricted 16 (23%) 97.4 (SD 13.0) 98.6 (SD 15.1) 23.5 (SD 4.8)
Poor 2 (3%) 82.0 (SD 4.2) 92.0 (SD 12.7) 18.5 (SD 2.4)
Very poor 0 (0%)
* 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 Intellectual level Mean age at follow-up
(SD) years
A NA MMR SMR
Good n = 0
Fair n = 5 (7%) 1 2 2 0 26.1 (5.9)
Restricted n = 12 (17%) 2 0 7 3 25.9 (7.1)
Poor n = 14 (20%) 0 0 5 9 25.5 (5.1)
Very poor n = 39 (56%) 0 0 1 38* 23.5 (4.9)
* p < 0.001, intellectual level versus outcome (Chi square)
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Autism Study Group normal or near normal functioning (Table 6). How-
ever, six of these 12 men no longer met criteria for an
In the Autism group one man held an ordinary job, and autism spectrum diagnosis. Of the males, who were still
four individuals had ‘‘daily occupational activities’’ in a regarded clinically to have sufficient impairment from
group centre. Thirty-three males in the Autism study their symptoms to warrant a clinical diagnosis of AS,
group had regular individually tailored daily activities. five had a GAF-score of 70, and one had a GAF-score
Thirteen males with (19%) had no organized daily of 72.
activity at all and were dependent on social services There was no difference at follow-up in GAF-scores
and/or the Swedish insurance system for their welfare. between the AS-age-at-diagnosis-groups, 5–9 years
59.5 (SD 7.1, n = 26), 10–15 years 58.4 (SD 9.7, n = 35)
Independent living and 16+ years 59.0 (SD 14.3, n = 9). The individuals
with AS, who had been followed-up at the CNC on a
AS Study Group fairly regular basis after diagnosis (n = 29) had a mean
GAF score of 57.6 (SD 6.8), similar to those who had
In the AS study group 14/22 (64%) of those who were not been followed there (n = 41) 59.8 (SD 10.8).
‡23 years, were living independently. In addition,
5 males with AS £ 22 years of age were living inde- Autism Study Group
pendently. Although living away from their parents,
they were all dependent upon them for support. Three The mean GAF-score was 22.2 (SD 16.5 range 4–67,
males with AS were living in a long-term relationship, p < 0.001) in the Autism study group. No individual in
and a further 10 had had relationships for varying the Autism study group had a GAF score of 70 or
periods of time in the past. above (Table 6).
Autism Study Group Involvement with the Police and the Law
Of the males who were ‡23 years in the Autism group AS Study Group
(n = 40), only 3 males (8%), one each with IQ-level A,
NA and MMR), were living independently. Although The vast majority in the AS study group were consid-
living independently, they were all in need of their ered very law–abiding. However, according to parent
parents for support. One male with Autism was living report, seven males (10%) with AS had been involved
in a long-term relationship, and yet another one had with police and the law for different reasons, (fraud
recently had a relationship for a longer duration. (1), harassment of police officer (1), harassment of
young woman (1), stealing (1), assault (1), sexual abuse
GAF-Scores (1), and unknown in 1 case).
The mean GAF-score for the AS study group was 58.9 In the Autism study group there were no reports by
(SD 9.4 range 35–82). Twelve males (17%) in the AS parents or other informants concerning involvement
group, had a GAF score of 70 or above, indicating with police or the law.
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in intellectual functioning between original diagnosis to recruit an Autism study group matched for IQ,
and follow-up (the third male was not tested at follow- particularly given speculation (e.g., Gillberg, 1998) that
up). They all fulfilled criteria for AS at follow-up. the main difference across cases clinically diagnosed as
There was a (non-significant) young age at diagnosis AS and autism is the much higher IQ in the former
by better outcome trend in the AS group. Given that group, and that there are no clinically diagnosed cases
young age at diagnosis probably also indicates a more of autism who have IQ in the superior range. We be-
difficult child, this trend would seem to indicate that an lieve that, as regards the social deficits, the two groups
early diagnosis in itself possibly would contribute to a were roughly comparable in childhood and/or adoles-
better outcome. However no definite conclusions can cence, and that they therefore constituted reasonable
be drawn in this respect on the basis of the current contrast groups for the purpose of follow-up of psy-
results. chosocial adjustment and general outcome in adult life.
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 Conclusions
rate of 10% criminality is not surprisingly high (Na-
tional Council for Crime Prevention, Sweden, 2005). Males with AS diagnosed in childhood–young adult
Nevertheless, the nature of the acts of crime performed age have outcomes that are very much better than
by the young men with AS was rather ‘‘severe’’ in those found in males diagnosed in childhood as suf-
several cases, and visualized difficulties with perspec- fering from autism/atypical autism. Nevertheless, given
tive-taking, and difficulties in appreciating the conse- their good intellectual capacity, the outcomes must be
quences of their actions, which was also reported in an regarded as sub-optimal. Medical, social and occupa-
earlier study (Murphy, 2003). tional services must find ways to achieve more indi-
In summary, we found a diagnosis in the autism vidually adjusted solutions so as to be more successful
spectrum to be stable over time in the vast majority of in meeting the needs of individuals with autism spec-
cases. Outcome in the AS study group was worse than trum disorders.
expected, taken the level of intelligence and outcome
criteria used into account. However, it was dramati- Acknowledgments This study was supported by the Linnéa &
Josef Carlsson Foundation, the Wilhelm and Martina Lundgren
cally better than in the Autism study group. The better
Foundation, the Söderström-Königska Foundation, the Swedish
outcome could probably be attributed to the much Autism Foundation, the Göteborg Medical Society, the Petter
higher FSIQ in the former group. We also found FSIQ Silverskiöld Memorial Foundation, grants from the State under
to be stable over time in the AS study group, which was the ALF (LUA) agreement, and by a grant from the Swedish
Scientific Council (MRC grant: 2003–4581) for professor
in contrast to the Autism study group where there was
Gillberg. Both studies were approved by the Medical Ethical
an intellectual decline over time. In a small AS sub- Committee of Göteborg University.
group there was psychotic disorder which, in turn, was
associated with decline in intellectual ability, and
hence in outcome. Criminal acts were not reported at Appendix A: Diagnostic Criteria for Asperger
very high rates, but the acts of crime were sometimes Syndrome
odd and reflecting the lack of common sense that is one
of the key issues in AS. Gillberg and Gillberg (1989) diagnostic criteria elabo-
rated (Gillberg 1991)
Limitations
1. Social impairment (extreme egocentricity) (at least
two of the following)
Of the 100 males approached for inclusion in the AS
follow-up study, only 76 participated, and 70 of these (a) inability to interact with peers
were included in the present study. We know that the (b) lack of desire to interact with peers
non-participants did not differ from the participants in (c) lack of appreciation of social cues
terms of overall intelligence and there are no obvious (d) socially and emotionally inappropriate behaviour.
indications that the examined group differs in any 2. Narrow interest (at least one of the following)
major way from the larger group originally targeted.
The autism contrast group may not be regarded as (a) exclusion of other activities
ideal because of its much lower IQ. Nevertheless, it (b) repetitive adherence
would be unrealistic (and, clinically, probably impossible) (c) more rote than meaning.
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J Autism Dev Disord (2008) 38:72–85 83
3. Repetitive routines (at least one of the following) (b) apparently inflexible adherence to specific, non-
functional routines or rituals.
(a) on self, in aspects
(c) stereotyped and repetitive motor-mannerisms
(b) on others.
(hand- or finger-flapping or twisting or complex
4. Speech and language peculiarities (at least three of whole-body movements)
the following) (d) persistent preoccupation with parts of objects
(a) delayed development The disturbance causes clinically significant impair-
(b) superficially perfect expressive language ment in social, occupational, or other important areas
(c) formal pedantic language of functioning:
(d) odd prosody, peculiar voice characteristics The is no clinically significant general delay in lan-
(e) impairment of comprehension, including misin- guage (e.g., single words used by age 2 years, com-
terpretations of literal/implied meanings. municative phrases used by age 3 years).
There is no clinically significant delay in cognitive
5. Non-verbal communication problems (at least one
development or in the development of age-appropriate
of the following):
self-help skills, adaptive behaviour (other than in social
(a) limited use of gestures interaction), and curiosity about the environment in
(b) clumsy/gauche body language childhood.
(c) limited facial expression Criteria are not met for another Pervasive Devel-
(d) inappropriate expression opmental Disorder or Schizophrenia.
(e) peculiar, stiff gaze.
6. Motor clumsiness
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