Focus on the Social Aspect of Autism
Journal of Autism and Developmental Disorders
Focus on the Social Aspect of Autism
Joanna Kałużna‑Czaplińska 0 1 2 4
Ewa Żurawicz 0 1 2 4
Jagoda Jóźwik‑Pruska 0 1 2 4
0 Department of Chemistry, Institute of General and Ecological Chemistry, Lodz University of Technology , Żeromskiego 116 Street, 90-924 Lodz , Poland
1 Jagoda Jóźwik-Pruska
2 Ewa Żurawicz
3 Joanna Kałużna-Czaplińska
4 CONEM Poland Chemistry and Nutrition Research Group , Lodz , Poland
Autism spectrum disorder (ASD) describes a set of neurodevelopmental disorders. Despite extensive ASD research lasting more than 60 years, its causes are still unknown. Without indicating the etiology, its development cannot be stopped. Over the years, both the definition and diagnostic criteria have developed. The number of ASD incidence is rising. The economical aspect should also be highlighted. This disorder presents particular challenges to affected children, their parents and physicians. The research of ASD, physician activities, policy making and raising the level of awareness must be coordinated. Special attention should be paid to the problem among adults with ASD.
Autism spectrum disorder; Prevalence; Expenditures; Costs
The more we understand autism spectrum disorder and how
it affects patients and their families, the easier it is to
determine the support and resources required by each individual
case. To understand what ASD is, in the current approach
we should refer to the Diagnostic and Statistical Manual of
Mental Disorders, 5th edition (DSM-5). Autism spectrum
disorder is a set of neurodevelopmental disorders, which
includes autistic disorder, Asperger’s disorder and pervasive
developmental disorder. It is characterized by the presence
of deficits in social communication and social interaction
across multiple contexts, and restricted, repetitive patterns
of behavior, interests, or activities
of ASD is based on comprehensive behavioral evaluations.
Despite numerous studies, the etiology of ASD is unknown
and remains the subject of speculations and misconceptions.
Nevertheless, there is evidence of a strong influence of genes
on the pathogenesis of ASD. Twin studies show that if one
of a pair of identical twins meets the diagnostic criteria for
ASD, the probability that the other will have the disorder
is as high as 58% for boys and 60% for girls, while in the
case of fraternal twins the probability falls to 21% for boys
and 27% for girls
(Hallmayer et al. 2011)
. In order to get a
thorough understanding of causes of ASD, numerous factors
and their interactions have been examined
(Szatmari et al.
, including a number of genetic disorders
(Xu et al.
, anatomical brain abnormalities (cerebellum, brain
stem, hippocampus, amygdale, and frontal lobes)
et al. 2004)
and the comorbidities such as psychiatric,
neurological, metabolic and gastrological disorders (Żurawicz
et al. 2013;
Kałużna-Czaplińska et al. 2013
McElhanon et al. 2014).
Literature reports that parents of children with ASD
experience increased psychological distress, including
depression, anxiety, obsession-compulsion, interpersonal
sensitivity, hostility, schizoid traits, paranoia, and
(Karst and Van Hecke 2012)
. Stressors refer to both
family and social life and include emotional aspects of
having a child with a disability, understanding a child’s needs,
various aspects of primary care, medical and education
services as well as financial hardship
(Gupta and Singhal 2005;
Tehee et al. 2009)
. Because of the fact that children of
different racial, socioeconomic and ethnic groups are affected by
ASD and due to the scale of its prevalence, many problems
related to ASD pose a challenge to the whole of society.
The aim of this paper was to present that the increasing
prevalence of ASD has given this disorder a social
dimension. Economic costs and other day-to-day problems of ASD
patients and their families were described.
Prevalence and Social Aspect of ASD
Epidemiological surveys provide the basis for awareness,
planning policy and service needs, and offer the information
necessary to identify potential risk factors for ASD. They
also initiate the investigation of ASD prevalence in countries
where such estimations have not yet been conducted. The
earliest epidemiologic studies performed in the late 1960s
according to Kanner’s criteria indicated the prevalence of
autism to be 0.5 per 1000 people among children in England
(Lotter 1996). Since then epidemiological studies of autism
followed by ASD have been performed in various places
worldwide. A summary of these studies is shown in Table 1.
Data released in 2016 indicate the prevalence of ASD at
14.6 per 1000 (1 in 68) people among children in the USA.
No change was noticed compared to the previous report
published in 2014
. ASD can be diagnosed by age
2, yet in most children ASD was identified after age 4. Less
than half of young patients were diagnosed with ASD by age
3 (ADDM Network 2016).
According to the data, ASD is 1.2 times more likely
among white children compared to black children.
Additionally, it is more common in non-Hispanic white children
(15.5 per 1000) than in non-Hispanic black children (13.2
per 1000) and Hispanic children (10.1 per 1000)
2016b; Christensen et al. 2016)
12 different criteria
DSM-III-R, DSM-IV NR
As it is presented in Table 1, the male-to-female
prevalence ratio varies widely and ranges from 2.5
(Kim et al.
2011; Li et al. 2011)
to 7.6 (CDC 2009). It is not entirely
clear how much of the increase in prevalence of ASD can be
explained by a true expansion of the incidence or by other
factors such as changes in the definition of ASD and
diagnostic criteria, variations in research methodology as well
as greater awareness and recognition.
A large impact of diagnostic criteria on the increasing
rates of ASD is the result of the lack of definitive
diagnostic tests for ASD. The diagnostic criteria are changing and
developing with the evolution of the definition of ASD
and Bearman 2009; Fisch 2012)
. Incompatibilities among
diagnostic criteria may affect the interpretation of subgroups
of ASD in epidemiological studies. This problem is
particularly evident in Asperger’s syndrome, for which the
DSMIV/ICD-10 criteria determine age-appropriate development
of language, adaptive skills and curiosity, up to 3 years of
age. The application of these criteria will result in
significant differences in the diagnosis of Asperger’s syndrome and
autistic disorders than in the case of application of
et al. criteria (2001
). As it can be seen in Table 1, the
application of DSM or ICD diagnostic criteria in studies depends
on the geographical region. Therefore, the comparison of the
prevalence of ASD in Europe and in the United States can
be difficult. There is a potential impact of the new DSM-5
criteria on the ASD prevalence and it is currently under
consideration. Significant changes in these criteria include a
complete removal of Rett’s disorder and consolidation of
autistic disorder, Asperger’s disorder and pervasive
developmental disorder into autism spectrum disorder, combination
of socialization and communication deficits into one set of
symptoms and extending the age criterion
Matson and Kozlowski 2011)
Despite the same diagnostic criteria, time frame and
location, the application of a more thorough assessment may
double the prevalence estimate within the same population.
This may indicate the necessity for a careful selection of the
(Posserud et al. 2010)
. The differences in
the research procedure may include terms of case-finding,
sampling and diagnostic definitions
has been proved that the level of detail collected about and
reviewed on children from multiple sources improves the
result of estimates
Considering the changes in the rates of ASD, increased
awareness cannot be overlooked. Qualified professionals
provide a proper diagnosis in accordance with current
criteria. Whereas, increasing knowledge of ASD in a society
may lead to a careful observation of disturbed behavior in
children by their parents and, consequently, an early search
for specialist advice. Their awareness began to rise from
the 1960s along with the number of works on the nature
(Lotter 1967; Rutter et al. 1970; DeMyer 1975)
Nevertheless, until the 1980s autism was too little known
to be located in a separate place in any of the ICD or DSM
classifications. In1980 the term ‘infantile autism’ was
introduced under the scope of a newly generalised category of
‘pervasive developmental disorders’ (PDD)
significant increase in the knowledge of autism began in
the 1990s after the publication of the diagnostic interview
schedule Autism Diagnostic Interview-Revised (ADI-R),
which was originally used for research purposes
(Lord et al.
. Higher awareness is reflected in the growing amount
of research funding available for ASD and the number of
ASD research grants
(Singh et al. 2009)
. Figure 1 shows a
rapid increase in both the number of all published reports
concerning ASD and research supported by the governments
in the last decade.
The role of mass media and all information campaigns
conducted by various governmental and non-governmental
organizations such as Centers for Disease Control and
Prevention (Atlanta, USA), Autism-Europe (Brussels, Belgium)
or Action for Autism (New Delhi, India) is very important.
Thanks to them, the knowledge about ASD reaches a wide
group of people.
Expenditure on Children with ASD
Due to the high incidence of ASD as well as a wide range of
medical services required for affected children, the impact of
ASD on the family and public budget is becoming
increasingly important. Determination of expenditure related to
ASD allows service planning, allocation of resources and
appropriate changes in policy
(Mandell et al. 2006)
Children with ASD have, on average, medical expenditures from
(Croen et al. 2006)
to even 9
(Mandell et al. 2006; Peng
et al. 2009)
times higher than other children.
Differences in the expenditure between children with
ASD and other children largely come from total outpatient
care, physician visits, and medications prescribed
et al. 2006)
. The economic aspect can differ even between
individuals with ASD and arise from personal needs
connected with treatment, care and support. Costs often depend
on age of the patients
(Buescher et al. 2014)
. Estimation of
costs should also include the ability of parents of ASD
children to work. The study has shown that mothers of patients
with ASD have lower incomes than mothers of children with
no health limitation. They are less likely to be employed and
less likely to have full time jobs
(Cidav et al. 2012)
reason also lies in the difficulty in finding appropriate and
affordable child care
(Parish and Cloud 2006)
In estimating the health care costs of children with ASD,
the presence of co-occurring conditions should be taken into
consideration. Almost half of the children with ASD can
have one of the three co-occurring conditions (including
attention deficit/hyperactivity disorder (ADHD), intellectual
Fig. 1 Frequency of reports
concerning ASD (1946–2016)
Bibliographic research related
to the use of term “autism or
autistic” in records from the
collection of PubMed database. In
the search two sets of
proceedings: with filters (Article types:
Research Support, U.S.
Government; Research Support, U.S.
Gov’t, P.H.S.; Research
Support, U.S. Gov’t, Non-P.H.S.;
Research Support, Non-U.S.
Gov’t) and without any filter
were applied. Results by year
(as timeline) were downloaded
in the CSV file. Records from
2017 were excluded from the
timelines due to the lack of a
full annual balance sheet
disability (ID) or epilepsy). Therefore, in children with ASD
and one or more co-occurring conditions, average
expenditures are even twice as high as in those with ASD
without a co-occurring condition
(Peacock et al. 2012)
. It was
also found that early intensive behavioral intervention for
children with ASD affects long-term monetary savings for
families and society
(Jacobson et al. 1998)
The costs associated with ASD can also directly affect
the family of a child with ASD through family out-of-pocket
expenses, including home and garden special adaptations,
replacement and repair of house and content damages,
specialist equipment (e.g. pushchairs and toys), training
and seminars courses, travel, diet specialists, education
materials. Half of the families of children with ASD report
time off work due to their child’s illness over the period of
(Barrett et al. 2012)
. The average loss of annual
income among parents of children with ASD is even 14%
of their reported income
(Montes and Halterman 2008)
summary of expenditures for children with ASD is presented
in Table 2. It should be noted that differences in expenditure
among the USA, UK and China may result from differences
in practice style and health care financing.
USA (Pennsylvania) (1994–1999) 0–21 Health care costs $9980 per year
USA (North Dakota) (1998–2004) 0–20 Health care costs $7894 per year
USA (1999–2000) < 19 Health care costs $6132 per year
UK (1999–2000) 4–10 Health care costs and non-health care £ 689 per week
USA (2000–2004) < 18 Health care costs $5592 per year
USA (2004) 1–21 Health care costs $6830 per year
USA (California) (2003–2004) 2–18 Health care costs $2757 per year
USA (2003–2005) 2–17 Health care costs $10,709 per year
USA (2005) ≤ 15 Loss of income of parents associated $6200 per year
with having child with ASD
USA (2005) 3–20 Health care costs $14,957 per year
UK (2006–2007) 2–4 Health care costs and non-health care £ 3083 per 6 month
China (2007–2009) 1–15 Health care costs
USA (2011) NR Health care costs
USA (2011) NR Behavioral intervention
Mandell et al. (2006)
Peng et al. (2009)
Liptak et al. (2006)
Järbrink et al. 2003
Leslie and Martin (2007)
Shimabukuro et al. (2008
Croen et al. (2006)
Peacock et al. (2012)
Montes and Halterman
Cidav et al. (2013
Barrett et al. (2012)
RMB 17,293 per year
Wang et al. (2012
Higher by $4110–$6200 per year CDC (2016a)
$40,000–60,000 per year CDC (2016a)
While a wide range of papers is focused on the childhood
autism, its prevalence, costs and treatment, it is hard to find
information about care system of adults with this disorder.
The majority of reports refer to patients in the age range
3–17. This tendency clearly indicates how little attention is
paid to individuals with ASD.
As ASD is characterized by social, communication and
behavioral disabilities, their severity will influence the
ability to work and live independently. The growing interest in
the use of medical home model for adults with ASD can be
seen. Yet, little is known about their availability
et al. 2012)
. The health care status of adults with ASD is also
neglected and concentrates mainly on the comorbid
(Koritsas and Iacono 2009)
. It is reported that the vast
majority of ASD patients is unable to live independently
(Bruder et al. 2012).
Conclusions and Directions for the Future
Autism spectrum disorder has a significant impact on the
health care and finance systems and represents a challenge
in the research planning. As it is shown in Fig. 1, the number
of ASD research grants funded by the USA and non-USA
governments in the last decade has significantly increased.
In the USA, in the years 1997–2006 the majority of projects
concentrated on basic science (65%) compared to clinical
(15%) and translational research (20%)
(Singh et al. 2009)
very important area of research is an early detection of ASD.
To meet the concerns of adults with ASD, family
members, practitioners and researchers, the areas that make a
difference to people’s day-to-day lives (e.g. effective public
services, evidence-based interventions, programs to enhance
individuals’ life skills, understanding of the place of people
with ASD in society) should be among the research
(Pellicano et al. 2014)
High incidence of ASD increases problems with access
to early diagnosis and intervention as well as economic
issues associated with ASD, which in turn deepens the
family crisis. Major challenges for the future of a child with
ASD include education and the possibility of employment
(Pellicano et al. 2014)
. All of these problems
associated with ASD should find support in the legal
system. In order to improve living conditions of children with
ASD and their families, there is a need for the development
of social policy in four key areas: health insurance, public
funding policies which support evidence-based practices
for ASD, federal policies and funding which support equal
access to services, criteria for evidence-based practices, and
research that meets the criteria for evidence-based practices
(Howlin and Moss 2012)
The progress observed in the last decade associated
with the diagnosis, treatment, awareness, funding, as well
as improving the functioning of the family of a child with
ASD allows optimism in relation to the future. It should be
noted that the research of ASD, physician activities, efforts
to develop policies and raising awareness should be
coordinated and the ethical issues should be taken into account.
Author Contributions All authors read and approved the final
Compliance with Ethical Standards
Conflict of interest The authors declare that they have no conflict of
Research Involving Human and Animal Participants This article does
not contain any studies with human participants performed by any of
Open Access This article is distributed under the terms of the Creative
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