The Challenges Faced by Parents and Their Expectations towards Their Special Needs Children

The Challenges Faced by Parents and Their Expectations towards Their Special Needs Children

Esther Goh Xin Yee¹, Aroyewun Temitope Folashade^2*, and Asma Perveen³

^1,2,3 Department of Psychology, Faculty of Human Development, Universiti Pendidikan Sultan Idris, Proton City, Tanjung Malim, 35900, Perak, Malaysia

¹Department of Neurosciences, School of Medical Sciences, Universiti Sains Malaysia, Kelantan, Malaysia

^*Correspondence Author

DOI: https://dx.doi.org/10.47772/IJRISS.2025.917PSY0020

Received: 13 March 2025; Accepted: 18 March 2025; Published: 22 April 2025

ABSTRACT

Parents of children with special needs encounter multifaceted challenges that significantly impact their emotional well-being, caregiving responsibilities, financial stability, and access to support systems. Despite growing research on this topic, limited studies have explored these experiences within the Malaysian context, particularly in relation to parents’ expectations for their children’s future. This qualitative study aims to address this gap by investigating the challenges and expectations of parents raising children with special needs. Using an existential-phenomenological research design, 20 parents were recruited through purposive and snowball sampling. Data were collected through online semi-structured interviews, transcribed verbatim, and analyzed using thematic analysis. To ensure credibility, researcher reflexivity, member checking, and inter-coder reliability were incorporated. Five key themes emerged regarding challenges: (1) Emotional Strain, (2) Caregiver Burnout, (3) Financial Difficulties, (4) Inadequacies in the Special Needs Support System, and (5) Lack of Public Awareness. Additionally, three themes were identified concerning parental expectations: (1) Fostering Independence in the Future, (2) Facilitating Adaptation to Society, and (3) Promoting Physical and Mental Well-being. Findings highlight the urgent need for policy improvements, enhanced support networks, and financial assistance programs tailored to families of children with special needs. While this study provides valuable insights, limitations include its focus on parental perspectives without triangulation from educators or healthcare professionals. Future research should incorporate multiple stakeholders to develop a more comprehensive understanding of support mechanisms for families navigating special needs caregiving.

Keywords: Challenges, Expectations, Parents, Special needs children

Sources of funding: This study was not funded by any agency or institution.

INTRODUCTION

The increasing prevalence of children with special needs (Olusanya et al., 2022; UNICEF, 2021; United Nations, 2021) has garnered significant attention worldwide, bringing greater awareness to the complex challenges faced by their parents (Antwi, 2023; Borro & Ceballo, 2023; Papadopoulos, 2021). Research across various contexts highlights that parents of children with special needs experience heightened emotional, financial, and social burdens compared to parents of neurotypical children. In particular, the emotional toll—often manifesting as caregiver burnout, chronic stress, and psychological distress—is especially pronounced among mothers, who bear the brunt of caregiving responsibilities (Ardıç, 2020). A major concern among parents is their children’s future, particularly their ability to achieve independence and function without parental support. According to expectancy-value theory (Eccles & Wigfield, 2002), an individual’s motivation and decisions are influenced by their expectations for success and the perceived value of an outcome. In this context, parental expectations play a crucial role in shaping their children’s development. However, as children grow older, many parents shift their priorities from academic success to fostering essential life skills, often due to persistent societal stigma and inadequate support systems.

In Malaysia, the number of children enrolled in special education programs has steadily increased, with 97,220 children registered as of October 2021 (Ministry of Education, 2021). Despite growing awareness and expanded services, Malaysian parents continue to grapple with multiple challenges, including emotional distress, financial strain, and limited access to effective support systems. While existing studies have explored parental struggles, there remains a lack of research specifically addressing how Malaysian parents’ expectations influence their experiences and how support systems can alleviate or exacerbate these difficulties (Antwi, 2023; Borro & Ceballo, 2023; Papadopoulos, 2021). This study aims to bridge this gap by identifying and analyzing the specific challenges faced by parents of children with special needs in Malaysia while also examining their expectations regarding their children’s education, personal development, and future prospects. Furthermore, it seeks to investigate the relationship between parental expectations and the challenges they encounter in meeting those expectations, as well as explore the role of support systems, resources, and services in helping parents manage these difficulties and fulfill their expectations.

By providing a comprehensive understanding of the interplay between parental challenges, expectations, and available support structures, this study contributes to the growing body of literature on parenting children with special needs in Malaysia. The findings will offer valuable insights for policymakers, practitioners, and educators in designing interventions and policies that better support these families and improve their overall well-being.

METHODS

Participants

This study involved 20 mothers of children with special needs. The participant group was composed of 11 mothers with children diagnosed with ASD, 3 with children diagnosed with Down Syndrome (DS), 3 with children diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), and 3 with children having comorbid diagnoses. Ethnic distribution among the participants was predominantly Malay (13), followed by Chinese (4), Indian (1), and Sabahan (1). Participants’ educational backgrounds ranged from secondary education to degree-level qualifications. The majority of the mothers were full-time homemakers, while six participants were employed in various occupations, including professional roles such as doctors and self-employed individuals.

Sampling

This study involved 20 participants. The sample size was determined based on data saturation (Guest et al., 2006), where no new themes emerged from additional interviews, making the number sufficient for qualitative analysis.

Instrument

A semi-structured interview protocol was developed specifically for this study. The interview guide included open-ended questions designed to explore the challenges faced by parents of children with special needs and their expectations for their children’s future. Probing questions were used to elicit deeper insights into their lived experiences. Examples of the interview questions included, “Can you describe your experience as a parent of a special needs child?”, “How have these challenges affected your family life and relationships?”, “What are your expectations for your child?”

Thematic analysis was conducted using Braun and Clarke’s (2006) framework to identify key themes and patterns within the data.

Procedure

This study adopted an existential-phenomenological qualitative research design (Fernandez, 2024) to explore parents’ lived experiences. Purposive and snowball sampling techniques were used to recruit participants, ensuring that they met the inclusion criteria of being biological parents of children diagnosed with ASD, ADHD, or DS and residing in Kuala Lumpur. Ethical approval was obtained prior to the commencement of the study (refer to the Ethics Consideration section).

Recruitment took place between October and January 2024 through social media and community platforms, including Diversiti Istimewa and THINK Enrichment Centre, a special needs center in Kuala Lumpur. Interested parents completed an online registration form via Google Forms to determine their eligibility. Once eligibility was confirmed, participants were contacted to schedule one-on-one interviews at mutually convenient times.

All eligible participants were provided with an informed consent form via email prior to their scheduled interviews. At the beginning of each session, the researcher reiterated the study’s objectives, clarified participants’ rights to voluntarily withdraw at any point without consequence, and explained the confidentiality measures in place. This included assurance that all data would be anonymized, securely stored, and used solely for research purposes. Verbal confirmation of understanding and consent was obtained before proceeding with the interviews. The interviews were conducted virtually via Google Meet and Zoom, with language options available in English, Malay, or Mandarin based on participant preference.

To minimize researcher bias, a reflexive journal was maintained throughout the research process, documenting personal assumptions, thoughts, and reflections. Additionally, peer debriefing was conducted, where another researcher reviewed the transcripts, codes, and emerging themes, providing an external and unbiased perspective to enhance the study’s credibility.

Data Analysis

Each interview lasted between 50 and 90 minutes and was video-recorded with participants’ consent. All recordings were transcribed verbatim, and participants were assigned unique codes (P1–P20) to ensure confidentiality. Transcripts in Malay and Mandarin were translated into English for analysis.

Thematic analysis followed Braun and Clarke’s (2006) framework. The analysis process involved familiarization with the data, initial coding, and theme development. Emerging patterns were identified, and relevant codes were grouped into broader themes based on shared experiences. The themes were refined iteratively to ensure coherence and accuracy in representing participants’ narratives. The final step involved reviewing and refining the initial themes, naming the established themes, and interpreting them in conjunction with relevant literature. This rigorous approach to thematic analysis facilitated a comprehensive understanding of the specific challenges faced by parents of children with special needs and their expectations for their children’s future.

RESULT

To accurately capture the depth of the data, the results are presented, highlighting key themes that emerged from the analysis of the challenges faced by parents and their expectations. Five key themes emerged, highlighting the significant challenges parents face in caring for their special needs children. Additionally, three other themes emerged relating to the expectations of these parents. The findings are presented with representative quotes from participants. For clarity and readability, nonessential words and verbal hesitations (e.g., ‘hmm’, ‘ah’) have been omitted from the excerpts.

Themes for Challenges Faced by Parents with Special Needs Children

Theme 1:  Emotional Strain

This theme elucidates the emotional challenges encountered by parents of special needs children, encompassing aspects such as emotional overwhelm, mental health issues, acceptance of the diagnosis, impacted family relationships, and insufficient support from spouses and family members. This phenomenon can be understood through four interrelated subthemes: Emotional Overwhelm and Mental Health Issues, Challenges in Accepting the Diagnosis, Lack of Support from Spouses and Family Members, and Strain on Marital and Family Relationships.

Subtheme 1: Emotional Overwhelm and Mental Health Issues.

This sub-theme focuses on the intense emotional burden that parents of special needs children experience, including feelings of guilt, anxiety, and depression. The data highlight instances where some parents were diagnosed with Major Depressive Disorder (MDD) and required hospitalization due to the overwhelming stress of their children’s diagnoses.

“I constantly have felt of guilt that my child is an Autism. I also visited psychiatry due to anxiety developed because of the uncertainty of my child’s progress and future. (P1)”

“I was prescribed antidepressants and sleeping pills by the psychiatrist, and I had been going for therapy for the first few years. (P5)”

“I felt depressed at the beginning of the journey. Although I am fine now, I would say the emotional battle at the beginning was so intense. (P8)”            

 “I was very depressed, and hopeless at that time. I had strong suicidal thoughts. (P14)”

“I was in the psychiatry ward in and out several times because I couldn’t face my child. (P16)”

These experiences were predominantly reported by mothers who were housewives and served as the primary caregivers for their children. They were also more commonly described by participants with lower educational backgrounds and were observed across various ethnic groups. The challenges faced significantly disrupted their ability to manage daily routines, care for other children, and sustain employment or social relationships. Emotional exhaustion emerged as a major barrier to effective functioning and coping, with some participants withdrawing entirely from social and familial responsibilities.

Subtheme 2: Challenges in Accepting the Diagnosis.

This subtheme explores the emotional difficulties many parents encounter in accepting their child’s diagnosis. The process of coming to terms with the diagnosis—or struggling with acceptance—often intensifies negative emotions and exacerbates mental health challenges.

“My mind went blank. It’s like the drama that we see on the TV. My surroundings suddenly felt so quiet and I was alone, freezing there. (P5)”

“The first challenge of course is the process of accepting the diagnosis. Previously when I talked about my children, I would cry very badly. Now I am getting better. I feel more comfortable to share more. (P13)”

“I don’t know how to react to the diagnosis. I don’t even hear about the word “Autism”. It scared me. Everything was new to me. It feels like the end of the world. (P17)”

“I think the acceptance of my children’s diagnosis is the most difficult part. Although I am accepting the diagnosis now, I still have the time when I think like “What if” they are not special needs, will things change? (P18)

On top of that, some participants disclosed having contemplated extreme measures to end their lives due to the overwhelming difficulty of facing their children’s diagnosis.

“…previously I had a very strong feeling to kill my son and then commit suicide. I feel like nothing much in this life that can make me anticipate living. (P14)”

“I was admitted to the psychiatry ward because I couldn’t accept my child’s diagnosis. (P16)”

This struggle with acceptance delayed crucial decision-making related to the child’s care and education. It also contributed to feelings of isolation, as parents often felt misunderstood by others who could not relate to their experience. These challenges were more commonly expressed by parents of ASD children with lower educational backgrounds, single mothers, or those with limited support from family members. In extreme cases, the inability to accept the diagnosis led to suicidal ideation or family breakdowns, reflecting the profound psychological distress experienced by these parents.

Subtheme 3: Lack of Support from Spouses and Family Members.

This subtheme delves into the insufficient emotional and practical support that many parents receive from their spouses and extended family members. It highlights the isolation and additional burden that a lack of support creates and disagreements over parenting styles.

“Me and my husband also got into more arguments because we have different opinions for our sons. (P3)”

“My husband initially was in denial. He did not see any problem in our first son. He always thinks that he is a normal kid. So, it took a long time for my husband and family members to accept my child’s needs that are different than other of the children (P9).”

“He was in denial. He said I was overthinking. It was hard for me to get support to go to therapy. He didn’t want to send him. I was alone to send [him to] therapy and doctor. (P11)”

“And for my side, my parents don’t understand what is Autism, so they don’t have the patience and tolerance for my son. So, I seldom went back even during festivals. (P14)”

“I don’t like to go back to my hometown now. Because my relatives will just simply comment on my children without caring about their emotions. (P16)”

The absence of emotional and logistical support heightened the caregiving burden, often leading to burnout. Disagreements over parenting approaches contributed to conflict, resentment, or marital strain. Some parents, particularly those from Malay ethnic backgrounds as reflected in the findings, reported avoiding their hometowns or family events, further isolating themselves from potential sources of support. These experiences were commonly shared by mothers who lacked adequate support systems from their spouses and extended family members.

Subtheme 4: Strain on Family Relationships and Marriage.

This subtheme examines the effects that raising a child with special needs has on marital and family relationships. It encompasses a range of issues, including marital strain, reduced family interactions, and feelings of guilt towards neurotypical children.

“His elder brother always complains that I only spend time with him, and his brother gets upset about that. I was so sorry for that. (P1)”

 “My elder son will complain that he did not get enough love from me. Because my husband is less patient with my younger son, so we try to split the responsibilities. So, I am the main caregiver of my special needs son and he takes care of my elder son. (P3)”

“I think when my children were young, they always asked why they needed to tolerate their younger brother. For example, we always ask them to give their toys to their younger brother because his younger brother does not understand anything. (P5)”

Several participants reported a significant reduction in the time they spend with their spouses and other family members and an inability to attend social or familial gatherings, largely due to the demands associated with caring for their special needs children.

 “I do feel that we are no longer able to have a relaxed and casual family time. We need to change based on his condition. (P4)”

“Because of them, and my psychiatric illness, our family is rarely able to spend time together well. My husband needs to take care of the children and I need to fight my negative emotions alone because my husband doesn’t have enough energy to look after me. (P7)”

 “With our own families, too, it doesn’t matter if it’s my husband’s family or mine, it’s limiting us from going to someone’s house often. (P13)”

 “We seldom go for any family gathering if we think our son is not going to be accepted. (15)”

“For sure, it will have some changes. We no longer join the family gatherings that often. Me and my husband also, don’t talk much now because both of us are very busy. (P18)”

Additionally, two participants reported experiencing significant marital strain and conflict as a result of their child’s diagnosis.

“Just my husband and me. It’s normal when you have a child like that, sometimes we also argue like that. (P13)”

“My husband divorced me for this reason. I don’t blame him. He just couldn’t accept him. (P14)”

Over time, this imbalance fostered guilt and tension within the family unit. Parents struggled to meet the emotional needs of all family members, often feeling torn or inadequate. In more severe cases, this strain contributed to divorce or emotional detachment within the household. These experiences were reported by mothers across varying education levels, ethnic backgrounds, and financial income brackets, highlighting the widespread impact of caregiving stress regardless of socioeconomic status.

Theme 2: Caregiver Burnout

This theme highlights the significant physical and emotional toll experienced by parents, particularly mothers, as primary caregivers of children with special needs. Many participants shared experiences consistent with caregiver burnout, including persistent fatigue, emotional instability, and difficulties balancing multiple roles. The ongoing nature of caregiving responsibilities, often without sufficient support, contributed to a gradual erosion of their physical health, emotional resilience, and personal well-being. Two subthemes emerged: Physical and Emotional Exhaustion, and Role Strain from Multiple Responsibilities

Subtheme 1: Physical and Emotional Exhaustion.

Participants frequently reported deep physical and emotional fatigue as a result of caregiving responsibilities. This includes the toll on physical health, such as chronic fatigue and lack of sleep, as well as emotional strain, such as feelings of being overwhelmed by the continuous demands of caregiving.

 “I can’t even relax. So sometimes I feel a bit burned out. (P3)”

“I feel stressed and exhausted to handle him all alone by myself. (P9)”

“My emotion is no longer stable. It changes easily with my son’s condition. If he throws tantrums, I also lose my patience very fast. (P15)”

“If I were to say which challenges I faced the most would be taking care of my child. The reason for that is that I had used up most of my energy and time. (P17)”

“Mainly is the stress to take care of him. I think sometimes I will feel tired and just want to rest. (P19)”

This level of exhaustion compromised the participants’ ability to maintain their emotional balance and physical health, often leading to irritability, reduced patience, and a sense of emotional instability. Many parents felt they were operating in survival mode, with minimal rest or time for recovery. This impaired their ability to fully engage with other family members, sustain employment, or invest in their own well-being. These experiences were reported by mothers who were housewives and the primary caregivers of their children, regardless of ethnicity or socioeconomic background.

Subtheme 2: Role Strain and Stress from Multiple Responsibilities.

The strain of balancing caregiving with other roles, including managing household tasks and fulfilling family obligations, was a significant aspect of burnout, which resulted in a loss of personal time and increased stress.

“I don’t have enough time to handle my things. I spend mostly all of my time with him. I can’t do my work. (P3)”

“My time is all fully occupied by him and the house chores.  I am losing my patience always because I do have not enough time for myself. (P4)”

The burden of fulfilling multiple roles without adequate support created a sense of being overwhelmed and emotionally stretched thin. Parents reported that their days revolved entirely around their children’s needs, leaving little room for self-care or leisure. This role strain not only contributed to emotional exhaustion but also strained relationships with other family members, as their needs were often deprioritized. These experiences were mostly reported by Malay families with more than two children and limited support from spouses and extended family members.

Theme 3: Financial Difficulties

Financial challenges emerged as a critical stressor among parents raising children with special needs. Participants consistently reported that the cost of interventions, therapies, and special education placed a significant strain on their household finances. In some cases, families had to forgo essential services due to financial limitations, which contributed to feelings of helplessness and inadequacy. This theme is discussed through three subthemes: High Costs of Interventions and Therapy, Single-Income Families and Economic Strain, and Future Financial Concerns.

Subtheme 1: High Costs of Interventions and Therapy.

This subtheme would focus on the financial burden families face due to the expensive nature of therapies, interventions, and special education required for their special needs children.

“I think the main problem is financial. Because the interventions are all very expensive. (P3)”

“I tried my best to send him to the intervention. However, the cost of the intervention made me give up at the end because I needed to consider my other children as well. (P6)”

“You can imagine two autistic sons, the expenses are double, some more the costs for interventions high. (P7)”

“The next is the financial challenge because we had to go for various therapies while waiting for a spot at Kiwanis. So, we had to seek therapy at private centers outside. That incurred various expenses. (P10)”

“Moreover, there is the financial issue. We cannot afford much with our salary, to be honest. We can only bring him to any free intervention. (P15)”

These financial constraints directly limited the quality and consistency of care their children received. Several parents were forced to pause or discontinue therapies, despite being aware of their potential benefits. This created emotional distress and feelings of guilt, as parents feared their financial incapacity might hinder their child’s developmental progress. These experiences were mostly reported by families with more children and lower educational backgrounds.

Subtheme 2: Single-Income Families and Economic Strain.

This subtheme could explore how the necessity for one parent to quit their job to care for the special needs child leads to a reliance on a single income, thereby increasing financial strain.

“But the financial aspects restricted the selection of intervention due to the cost. Because our finances are fully supported by my husband I need to take care of the children. (P1)”

“The next is financial. Because our family commitments are high. We fully depend on my husband because I am a housewife (P9)”

The reliance on a single income created vulnerability, as families had limited financial flexibility or savings. Parents reported increased stress in trying to prioritize daily household needs while also managing therapy costs, which often led to trade-offs that affected the entire family’s quality of life. These experiences were mostly reported by single-income families with lower educational backgrounds regardless of ethnicity.

Subtheme 3: Future Financial Concerns.

This subtheme would capture the anxieties and concerns expressed by parents regarding the future financial challenges as their children grow older, including the long-term sustainability of providing care and the anticipated increasing costs of interventions.

“…maybe in terms of expenses. Although we still haven’t faced this issue yet, I think as he needs more intervention, we would need to spare the money for his intervention. (P17)”

“Financial-wise, me and my husband started to feel the burden bit by bit. Because the expenses for both of them are very heavy as we planning to send them to private school. (P18)”

These anticipatory financial worries added to the psychological burden faced by parents. The uncertainty surrounding their ability to continue supporting their children’s developmental needs long-term contributed to chronic stress and influenced decisions about future family planning, employment, and lifestyle. These concerns were reported regardless of ethnicity and were particularly noted among parents with higher educational backgrounds, especially those whose children were diagnosed with ASD and DS.

Theme 4: Inadequacies in the Special Needs Support System

This theme encapsulates the various challenges parents face when trying to access and navigate the support systems available for their special needs children. Many parents in the study highlighted significant gaps and shortcomings within the existing special needs support infrastructure. These inadequacies often make it difficult for parents to secure the necessary resources and interventions for their children, leading to frustration and a sense of helplessness.

Subtheme 1: Unstructured Special Needs Education System.

This sub-theme focuses on the parents’ concerns about the lack of structure and organization within the special needs education system. Parents expressed a loss of confidence in the educational services provided by the government, citing issues like combining children with different diagnoses in the same program, which they believe hinders the effective management of their children’s needs.

“I think Malaysia’s special needs education system still has much to improve on. (P2)”

“Malaysia’s education for special needs also makes me feel more anxious because I don’t think my son will benefit much from the government education system for special needs. (P3)”

“I think the government did not provide any guidance or services that can help these special needs adults to adapt to society. (P5)”

“I think Malaysia is not yet ready for the education of special needs children. They do provide special needs education but till secondary school only. They did not provide direction or guidance for the special needs children that just graduated. (P6)”

“I think the education system is another challenge for me. Because I did not know where should I send my daughter after the Kiwanis. I don’t have much confidence in Malaysia’s special needs education system. (P10)”

 “I think I am quite worried about his education also. Because I don’t consider Malaysia’s government special needs education. (P17)”

“…also Malaysia’s education system, I would say it would be a challenge for me if I am not affordable for the better choice. (P20)”

These inadequacies caused parents to experience heightened anxiety and uncertainty about their children’s educational future. Many felt unsupported in planning for long-term development, and those unable to afford private alternatives were left with limited options. This lack of structure not only disrupted the children’s learning but also significantly burdened parents with the additional responsibility of sourcing appropriate educational pathways. These concerns were reported mostly by families from lower socioeconomic backgrounds, regardless of ethnicity.

Subtheme 2: Lengthy Waiting Lists for Government Interventions.

This subtheme highlights the parents’ frustration with the extended delays in government centers, which often force them to seek costly private services to avoid jeopardizing their children’s progress.

“I think the main problem is the long waiting list for government hospital appointments. (P1)

“The waiting list is always long and the gap for the next appointment is very far, sometimes it goes until 3 to 4 months. (P7)”

“Because the appointments are always too far, and I don’t think they can have any improvement from that. (P16)”

Delayed access to interventions not only impeded children’s developmental progress but also placed parents in a difficult position—forcing them to either wait and risk regression or pursue private services they could scarcely afford. This systemic delay added emotional pressure and financial strain, leaving many parents feeling helpless and disillusioned. These experiences were mostly reported by families facing financial difficulties, those relying on a single income, and those with lower educational backgrounds.

Subtheme 3: Perceived Lack of Professionalism and Quality in Government Services.

This subtheme addresses parents’ concerns about the perceived lack of professionalism and the difficulty in finding skilled therapists capable of handling their children’s specific needs.

“It’s difficult to get a therapist that is professional, and able to handle our children. (P1)”

The perceived lack of expertise and professionalism made parents hesitant to rely on government services, further narrowing their already limited options. As a result, parents were left with the burden of independently evaluating and sourcing professionals, often feeling overwhelmed by the lack of dependable support.

Theme 5: Lack of Public Awareness

The theme “Lack of Public Awareness” addresses the significant challenges that parents of special needs children face due to the broader community’s limited understanding and awareness of their children’s conditions. This lack of awareness often leads to stigmatization, insensitive remarks, and social exclusion.

Subtheme 1: Stigmatization and Challenges in Public Spaces.

This subtheme encompasses the widespread lack of public awareness; these children are often met with negative judgments, strange looks, or outright rejection from others in the community. Such stigmatization not only isolates the children but also places an emotional burden on the parents, who are often forced to shield their children from these negative interactions. Public spaces, which should be inclusive and accommodating, become sources of anxiety and stress for families and make everyday activities like going to a park, store, or restaurant challenging and emotionally draining.

“I would say the limited awareness among the community. I received quite several harsh comments. I still remember me and my son were asked to leave the library because of my son’s hyperactivity. (P5)”

“There’s also the stigma from society. Sometimes when we take the children out, people would ask questions like, “Can children with Down Syndrome speak?” There are some stigmas from people about children with special needs. (P10)”

 “I feel sad when I see them being excluded from the children in the playground. I also feel sad when they cannot do what other children do. (P11)”

 “Lack of awareness also might be a challenge. Although most people heard about the term Autism, they hardly understand what is Autism. They did not know that Autism is very broad, it’s a spectrum. (P15)”

 “I also had some bad experiences when bringing my boys out. The parents will tend to ask their children to stay away from my sons when I tell them that my sons have ADHD. So, it’s a bit sad. (P20)”

These interactions often left parents feeling isolated, defensive, and emotionally drained. Rather than finding relief or connection in public spaces, many parents felt judged or ostracized. As a result, some began avoiding outings altogether, which further limited their children’s opportunities for social exposure and placed a heavier emotional burden on the parents. These experiences were reported by most of the parents regardless of ethnicity, socioeconomic status, and educational background.

Subtheme 2: Insensitive Questions and Cultural Misconceptions.

This subtheme addresses the cultural misconceptions and insensitive questions that parents of special needs children frequently encounter, reflecting a broader lack of public awareness and understanding. Many parents reported receiving intrusive and hurtful questions or comments, often rooted in cultural beliefs that incorrectly attribute the cause of a child’s condition to parental actions or past behaviors. These misconceptions can lead to unwarranted blame and further isolate families from the support and empathy they need.

“What have you done in the past that your child become like this? (P2)”

“What have you done during the pregnancy? You did not take good care of yourself. (P6)”

“It’s common, the older generation knew nothing about Autism and they started blaming, making hurtful statements, or even asking questions that I found difficult to accept. (P16)”

These remarks often led to emotional hurt, guilt, and frustration among parents—especially when such comments came from extended family or members of their cultural community. For some, it strained familial relationships or created an internalized sense of blame, which added to the emotional toll of caregiving. The lack of accurate public knowledge not only reinforced stigma but also undermined parents’ confidence and increased their sense of social isolation. These experiences were mostly reported by mothers of children with ASD and DS who had limited emotional support from their family members.

Themes for Expectations of Parents towards Their Special Needs Children

Theme 1: Fostering Independence in the Future

This theme centers on the overarching aspiration that parents of special needs children have for their children to achieve independence in the future. Regardless of the severity of their children’s conditions, nearly all parents expressed a common hope that their children would be able to live autonomously, without relying heavily on others for support. This desire for independence spans both short-term and long-term goals, reflecting a deep-seated wish for their children to be self-sufficient in various aspects of life.

Subtheme 1: Self-Care and Daily Living Skills.

This subtheme focuses on parents’ expectations for their special needs children to develop the ability to perform daily living tasks independently. Parents emphasize the importance of their children mastering self-care routines, such as personal hygiene, dressing, and managing basic household chores. This is seen as the foundational level of independence, where parents hope their children can take care of their personal needs without relying on others.

“We also hope that he can at least be able to manage his own life in terms of the self-care routine. (P2)”

“My short-term expectation is for him to be independent. (P4)”

 “I hope she can grow up and live independently. (P10)”

“If they can take care of themselves, learn skills, they can rely on their own. (P12)”

“To be able to support themselves in the future. (P18)”

For many parents, this desire was not just about reducing their caregiving burden but also rooted in concern for their children’s future well-being, especially in the event that they, as caregivers, are no longer able to provide support. The emphasis on self-care reflects both practical concerns and emotional preparedness for the long term. These expectations were mostly expressed by parents of children with ASD, regardless of ethnicity, socioeconomic status, or educational background.

Subtheme 2: Educational Attainment and Employment.

A few parents expressed aspirations for their children to achieve educational milestones and secure employment, which they view as critical steps toward financial independence and self-sufficiency. This subtheme captures the expectations of parents who wish for their children to graduate from school, pursue higher education, or find a job that allows them to support themselves economically. The emphasis here is on the long-term goal of financial independence through gainful employment.

“We just expect that he can get a career that he likes that can support his living. (P5)”

 “Second, I just hope she can get a better education. (P10)”

 “For education level, I wish at least he can graduate from the university. (P17)”

 “I hope he can get a good job in the future. Like, can have a stable job. (P20)”

These aspirations highlighted the parents’ hope that their children would not only be able to care for themselves but also lead fulfilling, purposeful lives within society. For many, this translated into investing in therapy and education early on, despite financial and emotional strain. The idea of eventual employment served as both a motivating factor and a symbol of normalcy and success. These hopes were reported mainly by parents of children with ADHD or mild ASD.

Theme 2: Facilitating Adaptation to Society

This theme delves into the expectations that parents of special needs children have regarding their children’s ability to adapt and integrate into society. Beyond the foundational goal of fostering independence, parents also place significant importance on their children’s capacity to socialize, build relationships, and participate in community life. These expectations highlight the parents’ desire for their children to experience a sense of belonging and normalcy within society. Parents expressed a range of hopes, from their children being able to interact and communicate effectively with others to more aspirational goals such as finding a partner, getting married, and starting a family. The use of terms like “mingle”, “communicate”, and “interact” reflects the parents’ focus on their children’s ability to connect with others, which is seen as essential for their children’s overall well-being and quality of life.

Subtheme 1: Social Interaction and Communication.

This subtheme focuses on parents’ hopes that their children will develop the social skills needed to interact with others, build friendships, and communicate effectively in various social contexts.

 “Then, I also hope in the future he can mingle well with people. I don’t expect him to have many friends, but at least can mix well with people. (P3)”

“And in the future, hopefully, he can live like a normal person. He can make friends. (P4)”

“And I want them to at least be able to mingle with people. (P11)”

“…to be able to communicate with people. (P16)”

These expectations often reflect a deep parental concern that their children may face rejection, loneliness, or exclusion from society. For many parents, helping their child become socially engaged represents not only a developmental milestone but also a key to broader acceptance and emotional security. These concerns were commonly expressed by parents of children with ASD, regardless of their educational background, socioeconomic status, or ethnicity.

Subtheme 2: Long-term Social Integration – Marriage and Family Life

This subtheme encompasses the more long-term aspirations parents have for their children, including hopes that they will eventually marry and start their own families.

“Also, we hope that he can find someone that he likes and can get married if possible. (P5)”

These long-term expectations often reflect parents’ emotional investment in their children’s future happiness and completeness. While they recognize the potential challenges, such hopes suggest that parents envision not just survival or basic functionality for their children—but a life marked by love, connection, and the same milestones that characterize typical adulthood. These aspirations were primarily reported by parents of children with ADHD.

Theme 3: Promoting Physical and Mental Wellbeing

This theme highlights a fundamental desire among parents for their children to grow up in a state of good health and happiness, both physical and mental health, underscoring that their well-being is a primary concern in their caregiving journey.

“Me and my husband just hope that he can grow up happily and healthy. (P2)”

“My only expectation for him or my other children is to be healthy, happy, and do good for the world. (P6)”

“As long as she is healthy physically and mentally, I am grateful enough. (P8)”

“The most important thing is that they are happy. (P9)”

These sentiments reflect a strong emotional bond and protective instinct that guide the parents’ caregiving roles. Many parents measure their own success not by their children’s academic or social achievements, but by their children’s ability to lead a life free from unnecessary suffering. This priority often shapes the decisions they make regarding treatment, education, and daily routines—always with their children’s holistic well-being in mind. These perspectives were shared regardless of ethnicity, diagnosis, educational background, and socioeconomic status.

DISCUSSION

Parental acceptance of a child’s diagnosis is a key challenge. Parents often go through stages of shock, denial, and eventual acceptance, influenced by factors such as education, social support, and religious beliefs (Islami & Ansyah, 2020; Mansur et al., 2022). Some parents, however, struggle with acceptance due to fears of social stigma and uncertainty about their children’s future (Tatjana & Biljana, 2025). Caregiver burnout is also prevalent, with nearly half of the participants reporting significant levels of exhaustion and stress. The unpredictable behaviors of children with special needs, coupled with the overwhelming caregiving responsibilities, contribute to this burnout (Phoenix, Smart & King, 2020).

Financial strain is another considerable burden for parents. The costs associated with therapies, equipment, and specialized services can be prohibitive, especially for families relying on a single income. Studies confirm that families of children with special needs face substantially higher costs than those without (Adamek & Ero, 2022; Kamaralzaman et al., 2018). This financial pressure exacerbates stress and may contribute to caregiver burnout, particularly when access to affordable public services is limited.

Inadequacies in the support system, especially within Malaysia’s special education services, were another recurrent theme. Parents reported dissatisfaction with the structure and quality of government-provided education and therapy services, often opting for private care despite the financial strain. This is consistent with earlier research highlighting deficiencies in service availability (Kunagaratnam & Loh, 2010; Muniandy, 2018). Prolonged waiting lists for public services were another major concern. Parents expressed frustration with delayed interventions, which hinder their children’s progress (Johannessen & Alexandersen, 2018). Addressing these delays is critical for ensuring timely and effective support for children with special needs. The lack of public awareness and understanding regarding children with special needs contributes to societal stigma, further isolating families. Parents reported negative experiences in public settings and expressed a desire for greater societal acceptance (Brooks, 2019). Raising public awareness through educational campaigns is crucial to fostering a more inclusive and supportive environment for these families.

In terms of parental expectations, the study revealed three primary aspirations: independence, social adaptation, and maintaining both physical and mental health. Parents often hope for their children to develop the skills necessary for daily self-care and eventual independence, a concern mirrored in other studies (Fong & Ali, 2023; Suratih et al., 2022). Additionally, parents desire social inclusion and minimal stigma for their children, recognizing the importance of community interaction in their well-being (García-Carrión, 2023). Prioritizing the mental and physical health of their children, parents strive to create environments that foster growth and shield their children from societal prejudices (Chaudhry, 2023).

In conclusion, the challenges faced by parents of special needs children are multifaceted and interrelated. Addressing these challenges requires a holistic approach that considers emotional, financial, and systemic factors. Furthermore, aligning interventions with parental expectations—focusing on independence, social inclusion, and overall well-being—can improve outcomes for both parents and their children. To achieve this, improvements in the support system, greater public awareness, and financial assistance are critical in alleviating the burdens on families and fostering an environment where children with special needs can thrive.

Limitation of Study

The study’s sample may not capture the full diversity of experiences among parents of children with special needs, as participants were drawn from a specific geographic area. Also, self-reporting by participants introduces potential biases, including social desirability and recall biases, which may affect the accuracy and reliability of the data. Additionally, the study primarily focused on the experiences of parents, potentially neglecting the perspectives of other key stakeholders, such as healthcare providers, educators, and the children themselves.

ETHICAL CONSIDERATION

Ethical approval

Ethical approval was obtained from The Human Research Ethics Committee at Sultan Idris Education University with reference number: 2023-146-01.

Conflict of Interest

The authors declare no conflict of interest in this study. Also, the authors have considered the ethical responsibilities of the journal.

Author Contribution Statement

Esther Goh Xin Yee conceptualized the idea, and Aroyewun Temitope Folashade solidified it. Development of the method was done by Esther Goh Xin Yee, Aroyewun Temitope Folashade, and Asma Perveen. Data was collected and translated by Esther Goh Xin Yee but supervised by Aroyewun Temitope Folashade and Asma Perveen. The original draft was written by Esther Goh Xin Yee and Aroyewun Temitope Folashade and then reviewed and edited by Aroyewun Temitope Folashade and Asma Perveen.

Data Availability Statement

The raw data supporting the conclusions of this article will be made available by the authors, without undue reservation.

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