Autism in Serbia: insights into parental experiences, support networks, and systemic obstacles

Abstract

The aim of the present study was to examine parenting experiences (e.g. positive experiences, personal changes, experiences with the public sector, sources of support) of Serbian parents of individuals with autism. Serbia, a country on the Balkan Peninsula in Southeast Europe, has endured wars, inflation, and sanctions for the past 30 years. Thus, it is vital to learn more about the experiences of parents in post-war countries. Forty parents of individuals with autism were recruited through parental support associations, schools, and personal contacts. The parents were asked to respond to six open-ended questions. A qualitative content analysis method was used to analyze written responses. In total, 87.5% of the parents were mothers, while 85% of their children with autism were males, ranging from 4.5 to 41 years. Six themes were identified: (a) positive experiences of parenting, (b) personal changes, (c) sources of support, (d) positive experiences with the public sector, (e) negative experiences with the public sector, and (f) necessary changes in public attitudes towards families of individuals with autism. Thirty-seven parents reported positive experiences of parenting, while twelve reported negative experiences. Overall, parents were dissatisfied with support from the public sector, believing that the general public should be more educated about autism. The findings from the present study indicate that parents do not receive adequate support from the public sector (e.g. government). Recommendations are made for how to support parents of individuals with autism in Serbia.

Introduction

Child-rearing is one of the most significant and beautiful events in the life of a parent (Coulson et al. 2012). Although studies have shown that parents of children with autism experience increased stress levels (Baker-Ericzon et al. 2005), there have also been many reports of positive parenting experiences (Broady et al. 2017, Corman 2009). For example, in one report, mothers expressed joy in witnessing their child’s developmental gains, seeing their child happy, and spending time with their child (Corman 2009). In some cases, parents reported changes in their overall outlook on life as well as in their relationships with others (Green 2002). On the other hand, some parents mentioned feelings of sadness and a lower quality of life (Ludlow et al. 2012, Myers et al. 2009).

In their parenting role, parents of children with autism also collaborate with various professionals (e.g. healthcare professionals, service providers, teachers, etc.), and the quality of these encounters and collaborations varies (e.g. Ludlow et al. 2012, Myers et al. 2009). Many parents reported a lack of support, insufficient knowledge about autism among professionals, lengthy and inaccessible diagnostic processes, and struggles to access treatments and secure appropriate education for their children (Boshoff et al. 2018, Brewer, 2018, Daniels et al. 2017, Rhoades et al. 2007). When it comes to the positive experiences with professionals, parents valued support from professionals that was described as caring for the child and family, being engaged with the child, delivering quality services, and providing relevant information (Stanford et al. 2020).

Many studies have described the experiences of parents of individuals with autism worldwide (e.g. Corman 2009, Kayfitz et al. 2010, Woodgate et al. 2008), but only two have included Serbian parents of individuals with autism (Krsmanović et al. 2017, Pejovic-Milovancevic et al. 2018). In one of the Serbian studies, Pejovic-Milovancevic et al. found that 72% of parents received special government assistance for their child with autism, while 36% were frustrated with efforts to get services for their child in the past year. Overall, some parents were satisfied, while some were dissatisfied with support their child was receiving. The main difficulties related to the support parents faced were obtaining adequate education for their child and securing welfare/social supports (Pejovic-Milovancevic et al. 2018).

Serbian context

Serbia is an upper-middle-income country on the Balkan peninsula in Southeast Europe with a population of approximately seven million people (“Economy of Serbia” 2022). In the past 30 years, Serbia went through two civil wars that significantly affected the country’s economy and quality of life of its citizens. Therefore, it is not surprising that Serbia is among several European countries with the lowest gross national income and gross domestic product per capita (“List of sovereign states in Europe by GNI (nominal) per capita” 2022). Moreover, in 2019, 7.1% of population lived in poverty, while 31.7% of the population was at risk of social exclusion or poverty, a rate significantly higher than the European Union average (Bertelsmann Stiftung, 2022). Consequently, people with disabilities and their families have been significantly affected due to a lack of systematic support (Čolić and Kaljača, 2014, Marković 2021, Mikuš 2018).

Although Serbia adopted the Strategy for Improving the Position of Persons with Disabilities in 2006 and consequently adopted different laws to support and improve the quality of life of individuals with disabilities and their families, often, these laws have not been enforced (see Mikuš 2018, for further discussion). For example, the Constitution of the Republic of Serbia includes a section regarding people with disabilities, ensuring equality before the Constitution and the law, and prohibiting discrimination, especially based on mental or physical disability (Ministry for Human and Minority Rights and Social Dialogue, 2022). The Law on Prevention of Discrimination Against Persons with Disabilities from 2006 governs the prohibition of disability-based discrimination, addressing both general and specific cases, along with protection procedures and measures promoting equality and social inclusion (Ministry for Human and Minority Rights and Social Dialogue, 2022). Furthermore, there are several laws in the social welfare and education fields that aim to secure support and access to resources for people with disabilities (Ministry for Human and Minority Rights and Social Dialogue, 2022). As these laws were adopted over the past 17 years, it may take more time for their full implementation in practice.

In Serbia, when it comes to education, children have free access to schooling, and parents can choose whether to enroll their child in a special school or a mainstream school (Đorđević et al. 2022). However, the availability of inclusive education faces a challenge due to a restricted number of paraprofessionals resulting from insufficient budgetary allocations (Borisavljević, 2023). This scarcity of support personnel becomes particularly critical as many children find themselves unable to attend mainstream schools without the crucial assistance these professionals provide (Vidojković, 2023). The limited availability of such resources poses a significant barrier to inclusive education, hindering the ability of numerous children to access the educational opportunities afforded by mainstream schools.

While families receive government financial support monthly (an average of $300, “Kako do tudje nege” 2016, Marković 2021), this amount proves insufficient to cover all the expenses required to support a child, particularly considering that many parents must pay out-of-pocket for private treatments such as speech-language therapy (Arsić et al. 2021). Furthermore, good diagnostic and treatment centers, funded by the government, are predominantly located in larger cities (Lecic Tosevski et al. 2012, Marković 2021, Moldovan 2022). Unfortunately, obtaining governmental support is not always easy due to many bureaucratic obstacles. Parents are required to annually visit a healthcare committee (i.e. doctor specialist, psychologist) along with their child to prove their child has autism with extensive support needs and requires financial support (“Kako do tudje nege” 2016, Vujović 2021). Before the visit, parents need to obtain extensive medical documentation (e.g. from psychologists, speech-language pathologist, etc.), schedule an appointment, wait a long time for the meeting, and hope that the committee will approve their application for financial support. This process can be very stressful for the parents (Vujović 2021). Although autism awareness is slowly increasing with more articles in the lay press about autism, interviewed parents still report many daily obstacles (“Kako do tudje nege” 2016, Marković 2021, Moldovan 2022).

There has not been any nationwide survey on autism prevalence in Serbia (Čolić et al. 2022., Moldovan 2022). Thus, as Serbia has experienced wars, hyperinflation, and economic instability for the last three decades (“Economy of Serbia” 2022), it is particularly important to learn about experiences (e.g. positive parenting experiences, experiences with public sector, and available informal support) of parents of individuals with autism throughout these turbulent economic and social circumstances. In addition, I identified only two quantitative studies that explored the perception of needs and support among Serbian parents of children with autism (Krsmanović et al. 2017, Pejovic-Milovancevic et al. 2018). These studies used a survey method limited to several areas of support (e.g. parents were asked to rate their satisfaction with the support at home, school, and from service providers and to rate the main priorities for their children). The present study uses open-ended questions in order to elicit parental experiences (e.g. about experiences with the public sector and available informal support), as these types of questions produce more diverse responses and are more suitable for obtaining a deeper understanding of specific topics (Reja et al. 2003). A survey with open-ended questions was used in other studies exploring parental experiences of children with autism as well (e.g. Myers et al. 2009). Also, Green (2007) pointed out that previous studies have focused too much on the negative aspects of raising a child with a developmental disability and have not examined positive experiences related to parenting or the changes parents experienced as a result of parenting a child with autism. Therefore, in order to better understand the positive experiences and personal changes among parents from Serbia, two open-ended questions addressing these aspects specifically were included in the present study. Another limitation of the current literature is that only Pejovic-Milovancevic et al.’s article has been published in English, meaning that researchers and clinicians worldwide have minimal knowledge about the experiences of Serbian parents of individuals with autism. As more autism researchers and clinicians recognize the importance of presenting data from developing and underrepresented countries, and as autism organizations focus on underrepresented countries, the present paper is timely. The aim of the present study is to explore Serbian parents’ perspectives on (a) positive aspects of parenting children with autism, including personal changes that occur through parenting, (b) sources of informal support, (c) needed changes in the community (in Serbia, the word community includes public opinion, public sector, etc.) when it comes to families with a member with autism, and (d) experiences with the public sector.

Methods

Procedure

The Board of [University of Belgrade] approved the present study, which was part of a larger research study conducted in the Republic of Serbia. The larger research study aimed to understand various factors related to parenting a child with autism, including experiences of stigma, quality of life, self-esteem, empowerment, support, and interactions with the public sector. Parents were recruited through parental autism support associations, schools, and the author’s personal contacts. The author sent out invitation email with a detailed description of the study and visited several schools and associations in person. The author offered to send a packet containing the questionnaires, which included a self-addressed, paid envelope, or a link to the online questionnaires. No face-to-face interviews were conducted; all parents independently completed the written format questionnaires.

Both online and printed packets included an invitation letter, a study description, and questionnaires. To ensure confidentiality, parents were not asked to provide personal information or a signature, but they consented to participate in the study by completing the questionnaires. The study description explicitly stated that participation was entirely voluntary and parents could stop their participation at any moment. After completing all questionnaires, parents were asked whether they would like to be considered for a $20 monetary incentive. If they agreed, they provided their email addresses. In total, five monetary incentives were distributed, and email addresses were randomly selected using a random number generator.

To ensure that only parents whose children had autism diagnosis were included in the study, a three-way process of diagnosis confirmation was followed: (1) in the invitation letter it was written that the study was designed for parents of individuals with autism, (2) parents had to confirm in the questionnaire that the diagnosis was given by a medical professional, and (3) parents needed to write the exact diagnosis that was given. Only responses that confirmed all three steps were included in the final sample.

Instruments

As the present research was part of the larger study, parents received a set of 10 questionnaires in the Serbian language, which took around 45 min to complete. For the purpose of the present article, only data obtained from the three questionnaires (sociodemographic questionnaire, diagnosis and service questionnaire, and open-ended questions) are presented.

Sociodemographic questionnaire

The sociodemographic questionnaire contained questions such as age of parents and their child, parental educational level, their marital and employment status, number of biological and/or adopted children living in the home, number of family members living in the home, child’s co-occurring conditions.

Diagnosis and service questionnaire

Parents responded to four questions related to the diagnosis: (a) how old was your child when you suspected that he/she had a developmental delay? (b) which professional did you turn to for the first time because of concerns regarding your child’s development? (c) was the diagnosis of autism spectrum disorder given by a specialist (psychologist, psychiatrist)? and (d) how old was your child when autism diagnosis was given? In addition, parents were asked about the type of services their children have been receiving.

Open-ended questions

Parents responded in a written format to six open-ended questions:

1. What are your positive experiences related to caring for a child with autism?

2. Do you feel that you have changed since having a child with autism? If so, what changes have you noticed?

3. From whom do you get the most support when it comes to your child with autism?

4. What kind of changes do you think are needed in the community (i.e., public opinion, public sector) when it comes to families with a member with autism?

5. What have been positive experiences related to public services when you sought help for your child with autism?

6. Did you have any negative experiences in the public sector when you sought help for your child with autism? If yes, please briefly describe them.

Participants

The convenience sample consisted of 40 parents of individuals with autism who were citizens of the Republic of Serbia. The parents’ ages ranged from 34 to 71 years, while the age of their children ranged from 4.5 to 41 years (M = 15.1, SD = 8.84). A total of 87.5% of the sample consisted of mothers, while 85% of the individuals with autism were male. In total, 42.5% of the sample completed high school, and 50% completed college. The majority of the sample was married (75%), while just over half of the sample (57.5%) worked full time. The range of family members was 2 – 6, whereas the range of children living in a family was 1 – 4. Sociodemographics of the parents and their children with autism are presented in Table 1.

Table 1.

Sample characteristics.

Parents	N (%)
Gender
Female	35 (87.5)
Male	5 (12.5)
Education level
High school	17 (42.5)
College	20 (50.0)
Postgraduate	3 (7.5)
Employment status
Employed, full time	23 (57.5)
Employed, part time	1 (2.5)
Unemployed	13 (32.5)
Retried	3 (7.5)
Marital status
Married, live with a partner	30 (75.0)
Married, does not live with a partner	3 (7.5)
Divorced	7 (17.5)
Widowed	0
Single	0
Age	M = 45.13; SD = 8.63
	Range: 34 – 71
Total number of family members	M = 3.9; SD = 1.14
	Range: 2 – 6
Total number of children in family	M = 1.92; SD = 0.69
	Range: 1- 4
Child characteristics	N (%)
Age	M = 15.1; SD = 8.84
	Range: 4.5–41
Gender
Male	34 (85.0)
Child has co-morbidity	8 (20.0)

Data analysis

Sociodemographic data and information related to the diagnosis were analyzed using Statistical Package for the Social Sciences (i.e. SPSS). Open-ended responses were analyzed using the content analysis method (Graneheim and Lundman 2004), as this method has been recommended to be used with written open-ended questions (O'Cathain and Thomas 2004). First, responses were written in a table column in a Microsoft Word document and read through several times. After that, each response was condensed into meaning units and then labeled with code. Finally, sub-themes and themes were generated based on the similarities between codes. A senior researcher reviewed the final themes and sub-themes, but was not involved in the initial coding process. Additionally, I calculated the frequency and percentage of responses in each sub-theme, presenting the data accordingly. The written responses were in the Serbian language and for the purpose of the present paper, they were directly translated to English without correcting their structure or grammar.

Results

Parents reported, on average, that they suspected that the child had a developmental delay at the age of two years (M = 2, SD = 0.9), while the autism diagnosis was given around the age of four and a half years (M = 4.7, SD = 2.2, range from 2-14). Based on the Shapiro-Wilk Test of Normality (p < 0.01), data were not normally distributed across these two variables. When individuals with autism were divided into two groups based on their age at the time of the study (under and over the age of 15), the data showed that for the group younger than 15 years old, the autism diagnosis was provided at four years old (SD = 1.2), while for the group older than 15 years old, the autism diagnosis was provided at the age of 5 (M = 5.04, SD = 2.2). Little less than half of the sample initially visited a pediatrician when they suspected their child had a developmental delay, followed by psychiatrist (see Table 2).

Table 2.

Professionals whom parents initially visited due to concerns about their child’s development.

Which professional did you initially approach due to concerns about your child’s development?	N (%)
Pediatrician	16 (40%)
Psychiatrist	6 (15%)
Neuropsychiatrist	3 (7.5%)
Speech-language pathologist	3 (7.5%)
Neuro-pediatrician	2 (5.0%)
Team of professionals	2 (5.0%)
Psychologist	2 (5.0%)
Parent of child with autism	1 (2.5%)
Audiologist	1 (2.5%)
Neurologist	1 (2.5%)

Note. Missing data = 7.5%.

When it comes to the services, five (12.5%) of the parents reported that their children have not received any services. The most frequent treatment was speech-language therapy (62.3%), followed by psychomotor re-education (40%), comprehensive treatment by special education specialists (32.5%), psychotherapy (15%), occupational therapy (7.5%), musicotherapy (5%), sensory room (2.5%), and swimming (2.5%).

In regards to the written open-ended questions, six themes were extracted: (a) positive experiences of parenting, (b) personal changes, (c) sources of support, (d) necessary changes in public attitudes towards families of individuals with autism, (e) positive experiences with the public sector, and (f) negative experiences with the public sector.

Positive experiences of parenting

Four subthemes emerged in relation to positive parenting experiences: (a) personal growth, (b) support from professionals and the community, (c) pure love, and (d) the child’s development. Three parents out of 40 said they did not have positive experiences.

Personal growth

Nineteen out of 37 parents (51.3%), who wrote about positive experiences, reported personal growth, as they became advocates for their child and became stronger, more tolerant, patient, grateful, compassionate, and more understanding towards people who were discriminated against. Some parents even founded associations to support families of individuals with autism. One mother stated:

I have been taught patience and it is a very positive experience. The view of the world around me has changed. I have been taught to look at life from a brighter side, to be grateful and tolerant. People with autism are wonderful people, with feelings, they know how to love and are happy with the small things in life.

Support from professionals and community

Fourteen parents (37.8%) reported positive relationships with staff in schools, day centers, and private clinics as well as with other caregivers of individuals with autism. One parent said “[these positive relationships included] meeting other families who have children with autism. Support and exchange of knowledge about autism. Meeting wonderful compassionate people who are complete strangers in your life.”

Pure love

Nine parents (24.3%) emphasized the emotional component of having a child with autism, such as “feelings of true, sincere love” and “unconditional love” for their child. Parents also shared that closer relationships between family members have emerged.

Child’s development

Five parents (13.5%) highlighted their child’s learning and gaining skills such as communication, self-help skills, and reading as a beautiful experience. As one mother wrote:

I’m looking forward to the small achievements that are big for me: When my child got dressed on his own for the first time (everything was turned upside down, but his pants and sweatshirt were where they should be), when he ate completely independently for the first time at the age of 10 a whole meal with a spoon, etc. I am very proud of his every success, of what typical children do at the age of 2, 3, 4 and he [can do] at 9, 10, 11…

Personal changes

In total, two subthemes emerged (a) negative personal changes and (b) changes of priorities. Three parents out of 40 said they did not change.

Negative personal changes

Twelve parents out of 37 (32.4%) who wrote about personal changes reported negative personal changes such as stress, loss of self-confidence, and fear of child’s future. Some socialized less, their health deteriorated, and they become depressed and more vulnerable. One mother said, “Sometimes everything is aimless and in vain and I don’t see any sense in the future. I become sad and pessimistic which is not typical of me, and I cry a lot.”

Changes of priorities

Ten parents (27%) reported that they no longer cared what others thought about them and their child, that their view of what is important in life had changed. One mother wrote “…I stopped worrying about some things, now I think they are not as important: e.g. are my windows clean, is all my laundry ironed, is the dust wiped, is everything in its place, what will people say when my child is making noise in the street because he feels like it.”

Sources of support

The content analysis of the responses showed that parents mostly had one or two sources of support. The most frequent sources of support were immediate and extended family members (with spouse being the most common) and professionals. Friends were rarely mentioned. Several parents stated that they did not receive support from anyone or that they themselves are the only source of support.

Necessary changes in public attitudes towards families of individuals with autism

Overall, two subthemes emerged (a) education of the general population, and (b) community and state support. In total, eight parents out of 40 did not specifically respond to this question. Six parents said that changes were needed but they did not specify what changes. Furthermore, one was unsure and said “they will never understand us”, and one mother said that she is “preoccupied with [her] family” and does not think about this topic.

Education of the general public

This subtheme was most frequently mentioned among parents who expressed the need to educate people in the community about autism and the needs of families. Twenty-one parents out of 32 (65.6%) who responded to this question stated that it was necessary to increase autism awareness in the community and diminish prejudices. As one parent stated, “Autism should be explained and presented [in the media] as much as possible. Because people do not know what autism is and how families who have a child with autism live.”

Community and state support

Nine parents (28.1%) felt that the state and the community should provide “much more services and support for the family” with a member with autism. Further, parents said that families wanted to be accepted in the community “[… families] want to socialize, want to be happy,” and that they do not want to be “pitied.” They also believed that services and better arranged spaces for children are needed. Some parents believed that it was necessary to introduce paraprofessionals in both schools and day care centers.

Positive experiences with the public sector

Overall, two subthemes emerged (a) positive experience with service providers and (b) benefits and allowances. Ten parents out of 40 said they did not have positive experiences.

Positive experience with service providers

Nine parents out of 30 (30%) who shared their opinions on this topic reported having positive experiences with some service providers and educational institutions in general, such as special education teachers, schools’ administration and staff, parental associations, doctors, and daycare centers. Parents did not disclose specific aspects of these positive experiences. For example, one parent said, “[I have] positive experiences with the pediatrician,” while another wrote “The only positive experience is with the school for children with hearing impairment. Everything else does not exist. At school, they are warm, welcoming, simply wonderful!”

Benefits and allowances

Nine parents (30%) saw a positive experience with public sector manifested through their access to benefits and allowances. For example, some received disability-related financial support, a discount on certain utilities (e.g. cable television and heating), as well as free parking. One parent said, “We enter the doctor’s office immediately, we don’t wait in the lobby, it’s the best thing they’ve introduced.”

Negative experiences with the public sector

Overall, two subthemes emerged (a) general negative experiences with the public sector and (b) negative experience with medical and preschool staff. Nine parents out of 40 said they did not have negative experiences, while nine parents said they had negative experiences but they did not provide more details.

General negative experiences with the public sector

In total, 11 parents out of 31 (35.4%) who wrote about negative experiences reported various issues with the public sector. Most commonly, parents reported a lack of systematic support. For example, parents found no available allowance for their child’s treatments, encountered long wait times for treatments, or treatments were unavailable. In some cases, parents had to travel to larger cities to obtain necessary professional support or had to pay for treatments out of their own pockets. A parent wrote:

The public sector does not understand what we are talking about because autism is presented in a beautiful light, how well we write, draw, sing, act, but the problem is that they [individuals with autism] do not know how to cross the street, [they] eat concrete, are more aggressive because they are not accepted. Autism is not Asperger’s Syndrome and Rain Man. Autism is a big problem and I often say ‘come and live with us and you will see and feel what autism is’.

Negative experience with medical and preschool staff

In total, 10 parents (32.2%) reported various instances of negative experiences with medial and preschool staff. Some parents stated that medical staff did not have knowledge about autism, that some medical staff mistreated them, and that there was a lack of cooperation between professionals. Furthermore, parents reported long wait times for appointments with specialists and for enrollment in preschool. One mother wrote: “The interdepartmental committee in [name of the city retracted] fell through. I had a catastrophic experience with a general education preschool institution. Inclusion is a dead letter on paper” (in Serbian saying “dead letter on paper” refers to the existing laws, policies, etc. that are not enforced in practice).

Discussion

The aim of the present study was to better understand the experiences of Serbian parents of individuals with autism. Specifically, the focus was on understanding when and by whom the autism diagnosis was provided, personal experiences, sources of support, and experiences with the public sector.

Parental reports on the timing of autism diagnosis

In line with studies from other countries, Serbian parents in the present study reported that autism diagnosis was given around the age of five years (van’t Hof et al. 2021). However, data from the present study showed that autism diagnosis was given around the age of four for children who were younger than 15 years at the time of the study. Given that the autism diagnosis can be accurately provided between 15 and 24 months (Guthrie et al. 2013), and that parents in the present study suspected that their child had a delay in development around the age of two, these preliminary findings suggest that the provision of autism diagnosis is still delayed in Serbia. Certainly, further research on a larger sample is needed. Is it important to note that early autism diagnosis and early intervention are key for a child successfully making developmental progress as the effect of interventions often declines when treatment is started at later age (Sandbank et al. 2020). Therefore, enforcing developmental screening practices in Serbia should be a priority in order to identify autism at younger ages (Milošević et al. 2015). This is especially true knowing that parental reports are relatively reliable for early autism detection (Stupar et al. 2015). As pediatricians were the most frequently visited medical professionals in the study, there is a critical need to train them in recognizing autism symptoms. This is emphasized by findings from Bosnia, a Serbian neighboring country, which underscore the importance of early autism screening and systematic national training strategies for professionals, including regular screening and symptom recognition training (Pistoljevic et al. 2021).

Personal experiences among parents

One of the aims of the present study was to explore personal experiences among Serbian parents. They reflected on numerous positive aspects of parenting, including a profound sense of love, personal growth, acceptance from society, and joy in witnessing their child’s development. Similar positive experiences were reported by parents in Turkey and Australia (Aylaz et al. 2012, Broady et al. 2017). As a part of their personal growth, some parents in the present study became advocates themselves and founded associations for autism similar to those in Western countries (Myers et al. 2009, Woodgate et al. 2008). A minority of parents noted a shift in priorities, no longer worrying about societal opinions, echoing findings from Green’s (2007) study. On the flip side, negative personal experiences included deteriorating health, depression, loss of self-confidence, and fears about their child’s future—similar changes reported in other countries (Ludlow et al. 2012, Myers et al. 2009).

Sources of support

Previous research has emphasized the significance of social support for parents of individuals with autism (Wang et al. 2022). Therefore, another objective of the present study was to understand the sources of social support for Serbian families. The majority of Serbian parents reported having one or two sources of support, with spouses and close family members being the most common, followed by professionals. Unlike in the United States (Benson 2012), where family and friends were most frequently cited as primary sources of support, Serbian parents rarely mentioned friends in their support network. Similar to Macedonian parents, 10% of whom lacked support (Troshanska et al. 2018), some Serbian parents reported receiving no help in the present study. These findings suggest that the support network for parents in Serbia is limited to close family members and a few professionals who are in direct contact with their child; the findings also noted in a recent review that included Serbian and Croatian individuals with disabilities and their families (Čolić and Buljevac, 2023). This limitation may stem from parents isolating themselves due to existing stigma, resulting in a social circle predominantly comprised of family members (Čolić and Milačić-Vidojević, 2021).

Parental perspectives on necessary changes in the community

Many parents who shared their stories in various Serbian newspapers pointed out the necessity for numerous changes in the community (Marković 2021, Moldovan 2022, Rajić 2021). This sentiment was echoed by parents in the present study, emphasizing the importance of increasing awareness about autism, reducing stigma, and improving access to services. To foster sensitivity towards individuals with autism and their families, parents recommended a broader public education initiative. Previous global research on autistic adults and their parents, conducted in countries such as the USA, Argentina, India, and Kenya, has also highlighted the need for increased awareness, acceptance, improved rights for individuals with autism, and better quality and access to services (Frost et al. 2019, Lockwood Estrin et al. 2023, Masaba et al. 2021, Montenegro et al. 2022).

Parental experiences with the public sector

The mixed experiences of Serbian parents with the public sector, mirroring observations in Western countries (e.g. Ludlow et al. 2012, Myers et al. 2009), reflect a spectrum of sentiments and encounters that significantly shape the support and services they received. Varied experiences may be attributed to the different cities families come from, where officials’ autism knowledge and services might differ. Ludlow et al. (2012) proposed that parental encounters with the system could also vary based on the support needed for a child with autism. Additionally, the broad age range of individuals with autism in the present study suggests that parents may have distinct experiences across different time periods. Future research could delve into family experiences, focusing on specific age groups or geographic areas (e.g. larger city versus smaller city, different age group of the children).

In terms of positive experiences, some parents highly valued the public sector’s easy access to services, financial assistance, and various benefits. Moreover, they shared positive interactions within the public sector, where professionals demonstrated compassion, discrimination was absent, and officials were understanding when parents sought help. In a study by Stanford et al. (2020), parents also emphasized the importance of support from professionals for both their child’s development and their own well-being. In line with findings from Croatia and England (Bratkovic et al. 2017, Ludlow et al. 2012), Serbian parents shared that, once barriers to accessing educational services were overcome, the support they received from school staff was invaluable for their child’s development. Therefore, training professionals to display empathy, compassion, and understanding is crucial for enhancing the quality of life for both parents and their children with autism.

On the other hand, negative experiences in the public sector were often manifested through numerous administrative challenges, such as enrollment in school, accessing services, and negative attitudes of employees. Research in Serbia revealed mixed attitudes among teachers toward inclusion (Stančić and Petrović 2013), with prior inclusive practices training correlating with more positive attitudes (Milošević and Maksimović 2022). Therefore, nationwide teacher training programs could enhance instructional approaches, contributing to a better education for children with autism. Additionally, due to a lack of systematic support, some families in the present study had to travel to another city for their child to receive treatments, mirroring challenges reported in other Balkan countries (e.g. Daniels et al. 2017, Bratkovic et al. 2017). Given the financial stress on many Serbian parents of children with autism (Pejovic-Milovancevic et al. 2018), the added costs of travel or out-of-pocket payments for treatments could negatively impact their quality of life. Furthermore, some parents reported negative experiences with the physicians’ lack of knowledge about autism and a lack of cooperation between professionals which led to multiple visits to different specialists. Findings from Bosnia and Bulgaria, neighboring countries of Serbia, also highlighted medical staff’s insufficient knowledge about autism, leading to multiple visits before an autism diagnosis was given ((Iskrov et al., 2021), Pistoljevic et al. 2021).

Limitation

The present study has several limitations that warrant attention. First, although research indicates that parents can reliably report autism diagnoses in a web-based research study (Daniels et al. 2012), it is still important to note that I relied on parents report of autism diagnosis in the present study. Second, as parents responded in the written form, it is likely that their responses were not as comprehensive as they would be if they participated in an oral interview. Third, responding to the questions required certain level of the literacy. Fourth, the majority of autism associations and schools that responded to the study invitation letter were located in a larger and/or medium size cities, which could limit generalizability of results to the parents living in these areas. Fifth, although senior researcher reviewed the data, I was the only person that coded open-ended responses, which could limit the accuracy of the generated themes/subthemes. Sixth, as little over half of the sample had college and/or postgraduate degree, compared to 16.2% of the general Serbian public with college degrees (Lakčević et al. 2015), experiences of parents in the present study might be very different in comparison to the families with different educational background. Further research could explore these variables. Seventh, as the group was not homogeneous due to the wide age range among parents and their children, the generalizability of results is limited and findings should be considered preliminary. Future research could address this limitation by assessing parenting experiences in a more homogeneous group. Lastly, it is important to reflect on the sample size. Although the sample size is smaller, considering Serbia has a population of seven million people and there is no national registry of people with autism, the findings presented in this article are important preliminary findings in this area. Research with a larger sample or qualitative interviews could provide additional insights.

Conclusion

In conclusion, the present study sheds light on the diverse experiences of Serbian parents raising children with autism. These parents faced challenges with a limited support network, expressed general dissatisfaction with government support, advocated for increased public awareness about autism, and shared both positive and negative aspects of their parenting journey. Regarding experiences with the public sector, the findings highlight both positive aspects, such as compassionate professionals and certain benefits, and challenges, including administrative difficulties and the necessity for improved professionals training (e.g. increasing knowledge about autism among medical and school staff). Moving forward, addressing these issues through targeted interventions, nationwide training programs, and improved systematic support can significantly enhance the quality of life for both parents and children with autism in Serbia. Furthermore, the study highlights the need for ongoing research to explore additional nuances in the experiences of these families with a larger and more cohesive sample, ensuring a comprehensive understanding and facilitating more tailored support mechanisms.

Disclosure statement

The author declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding details

The author did not receive support from any organization for the submitted work.

Data availability statement

Data are available upon reasonable request from the author.

Geolocation information

Study was conducted in Serbia

Informed consent

Informed consent was obtained from all individual participants included in the study.