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Late diagnosis of Asperger syndrome in Croatia - a low-income country

Authors:
  • Psychiatric Hospital for Children and Adolescents
  • Psychiatric hospital for children and adolescents, Croatia, zagreb
426
Psychiatria Danubina, 2015; Vol. 27, No. 4, pp 426–428 Case report
© Medicinska naklada - Zagreb, Croatia
LATE DIAGNOSIS OF ASPERGER SYNDROME IN CROATIA -
A LOW-INCOME COUNTRY
Zorana Bujas Petković1, Vlatka Boričević Maršanić1,2, Branka Divčić3 & Nela Ercegović1
1Psychiatric Hospital for Children and Adolescents, Zagreb, Croatia
2School of Medicine Osijek, Josip Juraj Strossmayer University of Osijek, Osijek, Croatia
3Department of Pediatrics, University Hospital Center ''Sestre Milosrdnice'', Zagreb, Croatia
received: 4.8.2015; revised: 13.10.2015; accepted: 15.10.2015
* * * * *
INTRODUCTION
Asperger's syndrome (AS) is a pervasive develop-
mental disorder that involves qualitative disorders in
social relationship, atypical understanding of and use of
pragmatic language, restricted and repetitive interests
and activities, and high WAIS verbal/performance score
ratio (Woodbury-Smith & Volkmar 2009). Although AS
is an illness that begins in childhood, its diagnosis may
frequently not be done until later stages (Toth & King
2008). The diagnosis of AS requires time, resources,
and clinical experience. A clinical diagnosis is considered
the “gold standard“, although several structured clinical
interviews help clinicians reach the diagnosis (Toth &
King 2008, Volkmar et al. 2014). The child’s total
developmental profile as well as coexisting psychiatric
and medical disorders needs to be considered. Whenever
a definitive diagnosis of AS is made, the patient should
be given comprehensive psychosocial counseling and
offered the appropriate treatment (Volkmar et al. 2014).
While knowledge among health workers on childhood
ASD and the prevalence are on the increase in developed
parts of the world (Fombonne 2003), expertise and pro-
fessional support services are limited in most of the deve-
loping world (Bakare et al. 2008, Samadi & McConkey
2011). Early identification and intervention which have
been shown to improve the prognosis of AS may be com-
promised in low-income countries (Volkmar et al. 2014).
In Croatia, there is a serious shortage of specialists in
child and adolescent psychiatry. Currently there are
around 35 child psychiatrist in the country with the popu-
lation of about 4,5 million inhabitants. Children with AS
and ASD are diagnosed by child and adolescent psychia-
trists through public child and adolescent psychiatry
clinics which are only available in larger cities. Only few
child psychiatrists are experienced in the diagnosis and
treatment of patients with ASD. There is only one inpatient
facility for children with ASD. State-funded special
schools and day centre placements for children more seve-
rely affected or with other conditions such as intellectual
disability are provided, but also only in larger cities. On a
positive note, non-goverment organizations for children
and families with autism have been founded recently in
Croatia and have started with activities aimed at increasing
the level of awareness on ASD among the general
publicand among various categories of health care workers.
The following case describes a male patient with AS
diagnosed in adolescent age. This case illustrates a large
delay between the age at which parents first report first
symptoms and age at diagnosis. This paper also reflects
the unsatisfactory situation of the knowledge of
diagnosis and intervention in AS in Croatia, and in fact
even many other low-income countries throughout
Europe and the world, which will be discussed.
CASE REPORT
MM was a 17 years old young man who was born fol-
lowing a normal pregnancy and birth, and lived with his
parents and older sister. Family history of psychiatric
disorders was negative, and his sister was healthy. His
early motor development was normal. However, in pre-
school age he had unstable social relations, behavioral
problems with a low frustration threshold and temper
tantrums, and excessive isolated interests (he played with
ants and bugs, and tore books into strips of paper). These
behaviors did not seem prominent enough for his parents
to seek professional help. At the age of 6, the boy was
referred to the multidisciplinary assessment for enroll-
ment in school. Child psychiatrist described him as
„stereotypical, rigid in thoughts, does not look in the
eyes, does not tolerate physical contact“. Until the age of
6 he suffered from constipation and encopresis. Psycho-
logist noted that the boy was „tense, anxious, has
obsessive preoccupation with restricted thought contents
and difficulty accepting directed activity with occasional
negativism“. His cognitives kills were at low average
level, but he had difficulties with social reasoning, nume-
rical reasoning, short-term memory and graphomotoric
ability. MM was diagnosed with cerebral dysfunction,
emotional inhibition and communication problems, dysla-
lia, and cluttering. Enrollment into elementary school was
deferred, and psychotherapy and speech therapy were
recommended but never realized. The boy started regular
school a year later. He was an excellent student through
the elementaly school, but with his mother continuous
support and assistance. He had difficulties integrating
with peers and had no friends. He was often a victim of
peer bullying. He exhibited obsessive preoccupation with
restricted interests (history) and a series of compulsive
behaviors which interfered with his homework. Due to
Zorana Bujas Petković, Vlatka Boričević Maršanić, Branka Divčić & Nela Ercegović: LATE DIAGNOSIS OF ASPERGER SYNDROME
IN CROATIA - A LOW-INCOME COUNTRY Psychiatria Danubina, 2015; Vol. 27, No. 4, pp 426–428
427
severe motoric clumsiness and deficient coordination, his
performance during gym class was very poor. Social
impairment increased when he entered high school. He
showed no interest in social interactions and a lack of abi-
lity to empathize. He displayed a high level of preoccu-
pation with routines and purposeless procedures. At the
age of 15 years, he was still completely dependent on his
mother in homework and personal hygiene (his mother
shaved him and this has continued till present). His
mother requested another psychiatric/psychological eva-
luation because of a lack of independence and adaptive
psychosocial functioning appropriate for his age. Again,
the diagnosis of AS was not reached. During the second
year in high school, he began to fall behind with school
work at an alarming rate. He was unable to keep up with
regular high school. He was enrolled inhigh school
education for adults which did not require every day
attendance. Throughout elementary and high school,
school personnel did not notice any behavior problems or
referred the boy forassessment of mental health.
At the age of 17, MM was referred to a child psychia-
trist due to panic attacks, derealization and deprerso-
nalization which unabled him to attend school. Acci-
dentally, he was evaluated by a child and adolescent
psychiatrist experienced in the diagnosis and treatment
of patients with ASD. The patient was diagnosed with
AS and comorbid panic disorder. The EEG examination
and the brain MRI scan showed normal results. Fluvo-
xamine100 mg/day and alprazolam 0.5mg as-needed up
to 1 mg/day were prescribed. He responded well to
these medications and is still taking fluvoxamine.
The diagnosis of AS was based on previous medical
reports and several interviews with the patient and with
his family conducted by a psychiatrist experienced in
ASD. During examinations he avoided eye contact and
used a monotone voice. His thought process was
inflexible, concrete and persevering. No evidence was
found of a psychotic disorder. His mood seemed
euthimic with limited affect. However, a total lack of
understanding of social codes of behavior and an
inability to interact with other people in an appropriate
and socially acceptable manner were evident. He
displayed rigid behavior patterns and occupation with
order, discipline, organization, and rules. In a compre-
hensive psychological examination, he had higher
verbal than performance IQ, a non-verbal learning
disability and impairments in some aspects of executive
function. Adaptive functioning was significantly
deficient. Described results are concordant to already
familiar difficulties in the cognitive development of
children with AS (Klin et al. 2000). By generally
accepted criteria, the combination of these findings
correspont to the diagnosis of AS. To confirm the
diagnosis we used the Adult Asperger Assessment
(AAA) (Baron-Cohen et al. 2005). His AQ score was 36
(a score of 32 or more is needed to establish a
diagnosis), while the EQ score was 12 (a score of 30 or
less is required to establish a diagnosis). MM will soon
complete high school education with excellent grades.
DISCUSSION
The case presented here demonstrates that although
AS is evident in childhood, it may remain undiagnosed
into adolescence. One possible reason for the delay in
the diagnosis of AS, may be the relatively “mild”
manifestations of autism in this disorder, with an
absence of cognitive, developmental or language delay
in childhood (Lehnhardt et al. 2012). Consequently,
parents often have no concerns about their child’s early
development. In addition, AS tends to be more apparent
in adolescence and early adulthood, due to the marked
importance of social communication during this period
of life. Up to 70% of the affected persons develop
comorbid disturbances, mainly anxiety disorders and
depression (Lugnegård et al. 2011). Despite average
intellectual capacity, autistic traits may complicate
performance in many everyday situations and failure in
personal and vocational relationships, thus leading to
stress. These problems in turn often lead to depression,
anxiety and sometimes psychosis-like stress reactions. If
they then seek medical help, the manifestations of secon-
dary psychiatric disorders (anxiety disorders, depression)
may be the reason for referral as in this case, but may also
camouflage autistic experiences and behavior, leading to
difficulties in both differential diagnosis and treatment
(Cath et al. 2008, Roy et al. 2015).
Another underlying contributory factor for the late
diagnosis of AS in our case may be a limited capacity
for early identification and intervention of AS in Croatia
which is a low-income country. The early recognition of
AS among health workers in Croatia may just be
inadequate because of low level of awareness and
knowledge. Physician's knowledge or lack of know-
ledge about autism greatly influences the average age of
diagnosis of ASD, which is important to ultimate
prognosis (Rhoades et al. 2007). Case reports and
studies from the developing countries report on late
diagnosis of AS and other ASD because of the dearth of
professional services, very low level of awareness on
autism among the general public and various categories
of health care workers, a cultural context in less affluent
countries with a disability still seen as stigmatizing,
religious explanations of the disorder and healing prac-
tices, different child-rearing practices, adult tolerance,
and expectations around children’s behaviors (Samadi
& McConkey 201, Divan et al. 2012).
The solution to providing total care for children with
AS as well as ASD in Croatia and other developing
countries is twofold. The imperative need is to provide
infrastructure and staff trained to deliver specialised
care using the best resources at their disposal. Care of
individuals with AS and ASD needs to be integrated
into the primary health care system and other vital
sectors such as schools and welfare as they are well
placed to provide initial advice and guidance to
families. Since early diagnosis and intervention
programs for AS significantly improve the patient’s
long-term outcome, this case also highlights the need to
Zorana Bujas Petković, Vlatka Boričević Maršanić, Branka Divčić & Nela Ercegović: LATE DIAGNOSIS OF ASPERGER SYNDROME
IN CROATIA - A LOW-INCOME COUNTRY Psychiatria Danubina, 2015; Vol. 27, No. 4, pp 426–428
428
increase awareness of AS among the general population
that may lead to parents and family members suspecting
such a disorder in young children. To achieve important
improvements in the quantity and quality of services for
individuals with AS and ASD in Croatia and other less
affluent countries, training and development programme
on a national level should be developed and
implemented. A national project for creating guidelines
for early diagnosis and intervention for ASD has been
initiated in Croatia involving health care, education and
social welfare systems, and non-goverment organiza-
tions, but consensus has not been reached yet. The more
comprehensive project to facilitate the development of
systematic and sustainable solutions for enhancing
autism awareness, research, training and service
delivery conducted in Romania provides a transferable
model to achieve important improvements on a national
level within a brief time frame (Pasco et al. 2014). This
project included a number of strategies aimed at
developing knowledge and skills among professionals
and increasing awareness in political and public spheres
such as training programme for professionals working
in services providing care for children with autism
spectrum disorders and their families, courses for
general practitioners and psychiatrists, activities for
social and professional integration of people with ASD,
and media campaigns.
CONCLUSIONS
We report a case of a male patient with Asperger
syndrome diagnosed in adolescence when referred for
anxiety disorder, secondary psychiatric condition due to
chronic stress in academic and social functioning as a
result of specific AS symptoms. This case presents the
large delay in the diagnosis of AS in Croatia and many
other low-income countries throughout Europe and the
world. Unlike countries in Western Europe and North
America where infrastructure and capacity are available
to meet the needs of individuals with ASD, little
expertise or capacity exists in most of the developing
world. To improve early detection and intervention of
AS in developing countries throughout the world,
systematic screening, training of professionals and
increasing awareness among the general public should
be implemented through inclusive collaboration with
local and international stakeholders.
Acknowledgements: None.
Conflict of interest: None to declare.
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Correspondence:
Vlatka Boričević Maršanić, PhD, MD
Psychiatric Hospital for Children and Adolescents
Kukuljevićeva 11, 10 000 Zagreb, Croatia
E-mail: vlatka.boricevic@zg.t-com.hr
... Research suggests that the prevalence of autism in Croatia is grossly underestimated (Benjak, 2015), particularly with regard to abler individuals (Petković et al., 2015), and that diagnostic pathways are unclear (Ombudsman for Children with Disabilities, 2014). This was confirmed in the experience of parents, who told of spending years seeking a diagnosis for their child and being passed from professional to professional in their quest. ...
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