Embracing Autism: The Transformative Power of Love, Community, and Resilience in Filipino Families a Phenomenological Hermeneutical Study

Alpha Z. Cristobal

Miriam College

ABSTRACT: Raising adolescents with autism has presented families a complex journey towards facing unique challenges and transformative experiences. The parents’ shock and grief of diagnosis because of lack of awareness and subsequent emotional adjustment have encouraged families to exercise faith and acceptance to see the child’s autism as a unique identity rather than a disability. This phenomenological hermeneutical study explores the emotional landscape of ten Filipino families with adolescents diagnosed with autism in the Philippines and highlights love as the guiding theme for hope and resiliency during their initial process of grief and acceptance, of dealing persistent challenges, of sibling involvement, and of varied parental approaches.

Financial strains exacerbated by the COVID-19 pandemic added complexity to accessing essential therapies and services which lead to necessitating community support and creative coping strategies. The family dynamics developed during this time highlighted the pivotal roles of siblings, the balance of responsibilities, and the emotional growth within the family which includes siblings’ progression from confusion to acceptance.

Effective parenting strategies emphasize clear communication, consistent discipline, and fostered independence. A fathers’ proactive role in behavioral management and a mothers’ focus on emotional and social needs illustrate the diverse approaches required. The digital era brought new a source of support through online communities and advocacies which enabled families to share experiences, to educate themselves, and to promote awareness. Resilience and coping strategies including self-care, spiritual resilience, and embracing present moments are crucial for sustaining the demanding journey of raising adolescents with autism.

This study underscores the importance of tailored support systems, voluntary community involvement, and a holistic understanding of autism care that will offer valuable insights for professionals and policymakers.

Keywords: autism, Filipino families, resilience. parenting strategies, COVID-19, digital advocacy

 INTRODUCTION

Autism involves a complex neurodevelopmental disorder concerning social interaction, communication, and behaviors that are sometimes accompanied by intellectual disability together with other comorbidities. This poses peculiar problems for individuals and their families which influence academic achievements, social abilities, and overall life quality. This study investigated how Filipino families living with adolescents on the autism spectrum encounter life’s challenges. It is set to bring out in its result the strong points of each family under study as well as their resilience and unique journey towards acceptance and empowerment using in-depth interviews. The findings from this research can be used to develop better interventions or support systems that can improve the well-being of these families.

REVIEW OF RELATED LITERATURE

The review of related literature is crucial for grounding the research on Filipino families with adolescents on the autism spectrum. It will cover four main themes: autism spectrum disorder (ASD) in adolescents, the lived experiences of families, the challenges faced, and coping strategies and resilience. This review will summarize and synthesize existing research, highlight gaps and limitations, and identify areas for further study. The insights gained will enhance understanding of the experiences and challenges of these families and inform the development of more effective interventions and support systems.

Autism Spectrum Disorder (ASD) in Adolescents

The concept and definition of autism spectrum disorder (ASD) have gone through many changes over the years. It started its early accounts of diagnosis until it reached the many studies that increased understanding, innovative care, and treatment. In 1911, a psychiatrist named Eugen Bleuler first coined the word autism to describe people withdrawing from the inner world (Rowland, 2020). Bleuler described autistic children as wanting to be on their own and to be isolated from society. Years later, Leo Kanner studied eleven highly intelligent children who shared similar characteristics consistent with the definitions of autism. In 1944, medical professor Hans Asperger studied four young boys whom he considered to have autistic personalities because of difficulties with social interaction (Fitzgerald, 2019). While in 1952, the Diagnostic Statistical Manual (DSM) of Mental Disorders of the American Psychological Association (APA) first mentioned autism as childhood schizophrenia. Meanwhile, ASD describes a range of heterogeneous neurodevelopmental conditions that portray increasingly varied representations of human thought and experience (APA, 2013; Fein & Rios, 2018; Grinker, 2020). ASD is characterized as a clinically significant impairment in social and communicative areas as well as restricted and repetitive behaviors and interests (APA, 2013).

The DSM-5 (APA, 2013) describes the symptoms of autism using diagnostic domains that include Levels 1 to 3 wherein a diagnosis of Level 3 indicates the need for very substantial support whilst a diagnosis of Level 1 indicates otherwise. Up to recently, medical professionals and researchers treated autism as a deficit-based disorder (Cooper et al., 2021).

In recent years, there has been a shift towards the use of a strength-based approach in which the strengths of people on the autism spectrum are considered. This research focused on the first-hand experiences of adolescents on the autism spectrum using a strength-based approach to consider the factors which they perceived to have impacted their understanding and acceptance of self (Cooper et al, 2017; Happé & Frith, 2020).

In the study of lived experiences of Filipino families with adolescents on the autism spectrum, it is important to consider the levels of autism as classified in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition. The DSM-5 outlines three levels of autism spectrum disorder based on an individuals need for support and on the impact of their symptoms on their daily functioning (Lai et al., 2013; Hodges et al., 2020).

Autism and Adolescence

The time and process of growing from a child to an adult is known as adolescence. The Latin word adolescence, which means to grow, is the source of the English word adolescent. Nowadays, we refer to young individuals who are no longer children but are also not yet adults as adolescents. Adolescence begins between the ages of 10 and 19 when a person first experiences puberty and the onset of sexual development according to the World Health Organization. Despite the lack of a definite cutoff point, it ends with the social shift to independence from the family.

Adolescence, a critical developmental period marked by significant physical, emotional, and social changes, presents unique challenges for individuals with autism (Kuo et al., 2018). Recent studies have continued to highlight the complexities faced by adolescents on the autism spectrum. Toscano-Hermoso et al. (2020) emphasized that the increased social demands during adolescence can exacerbate difficulties in social interaction and communication which can lead to heightened feelings of isolation and depression.

Similarly, Bedard and Hecker (2020) noted that despite a desire for social connections, adolescents with autism often struggle to develop peer relationships due to social awkwardness which is further compounded by the intricate social interactions typical of this developmental stage. In 2021, Crowell explored the mental health challenges of adolescents with autism and found a high prevalence of anxiety and depression thus underscoring the need for targeted mental health interventions.

MacMullin et al. (2021) investigated the effectiveness of social skills training programs tailored to autistic adolescents. Reports found significant improvements in a child’s social communication skill and peer interaction. Pellicano et al. (2020) highlighted the importance of considering the unique strengths and challenges of adolescents with autism when developing interventions, particularly for those with co-occurring intellectual disabilities to promote better social and academic outcomes. More recently, McLeod et al. (2022) examined the role of family support in mitigating stress and promoting resilience in adolescents with autism. This emphasized the need for family-centered intervention strategies.

Additionally, a study by Halladay et al. (2023) focused on the impact of inclusive education settings on the social development of adolescents with autism. Halladay found out that inclusive environments significantly enhance social skills and peer relationships. Nguyen et al. in the same year explored the relationship between sensory processing issues and social challenges in autistic adolescents which suggests that addressing sensory needs can improve social interactions.

These findings collectively suggest that tailored support and interventions are crucial to addressing the social and emotional needs of adolescents with autism, ultimately improving their quality of life during this critical developmental period.

Lived Experiences of Families

Every parent’s journey includes heartwarming tales of bearing a child inside the mother’s womb, tracking all developmental milestones, and watching the child grow into a young adult however, not all parents have typical parenting experiences particularly when the parents need to take care of the special needs of their child.

The lived experiences of families with adolescents on ASD may vary widely among different family members including fathers, mothers, and siblings. Each family member may experience unique challenges and may have different perspectives on the impact of autism on their lives.

Challenges

Families of adolescents with autism spectrum disorder (ASD) encounter a diverse range of challenges that evolve from the initial diagnosis and extends into various aspects of daily life and long-term planning.

Diagnosis and Stages of Grief

The diagnosis of autism spectrum disorder (ASD) marks the beginning of a complex emotional journey for parents which often aligns with the Kübler-Ross model of grief. Initially, parents experience denial—the profound shock and disbelief following the diagnosis as parents struggle to accept the implications for their child’s future and the adjustments required in their family life (Anderson and Smith, 2018). This stage is marked by a sense of avoidance because parents may find it difficult to fully accept the diagnosis or its impact.

As reality begins to set in, many parents move into the anger stage. Williams (2020) describes how this stage involves frustration and resentment which may be directed towards oneself, family members, or even health care professionals. Parents might feel a sense of unfairness or injustice about their child’s condition which causes them to reflect with deep emotional struggle and to reconcile their expectations with the new reality.

In the bargaining stage, parents may seek ways to alter their situation. Anderson and Smith (2018) discussed how parents might engage in wishful thinking or make deals while hoping for a different outcome or searching for interventions that could mitigate their child’s challenges. This stage reflects the desire to regain control and reduce the perceived impact of the diagnosis.

The depression stage involves feelings of sadness and despair as parents come to terms with the long-term implications of the diagnosis (Brown & Lee, 2022). This stage can be characterized by a profound sense of loss and mourning for the future they envisioned for their child. The financial and emotional burden described by Brown and Lee (2022) can exacerbate these feelings which may lead to a period of deep emotional reflection and difficulty.

Finally, in the acceptance stage, parents begin to adjust to their new reality. Williams (2020) highlights that while this stage does not mean complete happiness, parents start to develop coping strategies and find ways to move forward. They begin to adapt to the ongoing challenges of raising a child with autism with a greater sense of understanding and readiness to seek and to utilize available resources.

Financial Strain, Health Services, and Special Education (SPED) Programs:

As families work through these emotional stages of grief, they face ongoing difficulties such as financial strain and complexities of navigating health services (Brown and Lee, 2022).

Research indicates that families often face considerable financial burdens due to expenses related to medical treatments, therapies, and special education services. For instance, a study by Brown and Lee (2022) highlights the economic pressures on families because of out-of-pocket costs for therapies and interventions that can be substantial for their child’s care. Similarly, a study by Harris and Smith (2021) emphasizes the economic strain linked to ongoing medical care and educational support that further stresses the need for financial assistance and policy interventions.

Navigating health services presents another major challenge. Families frequently encounter difficulties in accessing appropriate and timely care due to the complexity of the health care system and the variability in service quality. Garcia et al. (2023) found that families often struggle with coordinating between multiple providers and securing consistent care which adds to their stress and financial burden. Furthermore, Davis et al. (2020) explores the barriers families face in obtaining necessary health services including long waiting times and inadequate insurance coverage.

Special education programs (SPED) are critical for supporting adolescents with autism because they offer tailored educational strategies and interventions however, the effectiveness and accessibility of these programs can vary significantly. The research of Smith and Johnson (2022) revealed the challenges related to individualized education plans (IEPs) and secured appropriate placements which can be a source of frustration and additional financial strain for families. A study by Lee and Martin (2021) also highlights disparities in the quality of special education services and points the need for improved resources and advocacy.

The COVID-19 pandemic has further complicated these challenges. School closures and shifts to remote learning have disrupted educational routines and access to special education services which amplified existing difficulties for families. Jones and Taylor (2022) documented how the pandemic has intensified its strain on families by limiting access to in-person therapies and support which showed the urgent need for adaptable and resilient educational and health care solutions.

The intersection of financial strain, health services, and special education needs is essential for developing comprehensive support strategies that address both the immediate and long-term requirements of families navigating the autism spectrum disorder.

Transition into Adulthood

The transition into adulthood is a particularly critical period for adolescents with autism spectrum disorder (ASD). This phase involves planning for continued education, vocational training, and independent living and is marked by a range of complex challenges.

The research underscores the importance of comprehensive planning and support during this transition to ensure successful outcomes. Williams (2020) highlights the need for tailored strategies to address the unique needs of adolescents with autism as they move toward adulthood. This emphasizes how important it is for a family to prepare for both educational and vocational milestones.

Additional studies provide further insight into these challenges. For instance, Dorsey et al. (2019) explores the difficulties adolescents with autism face in accessing vocational training and employment opportunities. Their research highlights the need for improved vocational programs that cater to the specific skills and interests of individuals with autism and the importance of early career planning to enhance employment outcomes.

In another study, White and Roberts (2021) examine the role of family involvement in the transition process. They said that family support is crucial in navigating the complexities of transitioning to adulthood which includes the need for guidance on legal and financial matters as well as support in developing independent living skills. Their findings suggest that increased family engagement and training can significantly impact the success of the transition.

Furthermore, the study by Mason et al. (2022) addresses the challenges associated with independent living. Their research indicates that many adolescents with autism struggle with daily living skills and self-management which underscores the necessity for targeted interventions that focus on life skills training and support services.

The impact of the COVID-19 pandemic has also been significant. The pandemic’s disruptions have affected access to transition services and exacerbated existing difficulties. According to a study by Jones and Taylor (2022), the pandemic has intensified challenges related to transitioning to adulthood because it limited access to essential services and reduced opportunities for in-person vocational training and social interactions. Understanding the multifaceted nature of the transition into adulthood for adolescents with autism including educational planning, vocational training, and independent living is essential for developing effective support systems and interventions.

Coping Strategies and Resilience

Coping strategies and resilience are critical factors in the experiences of families with adolescents on the autism spectrum. Coping strategies refers to the methods or techniques that individuals use to manage stress while resilience refers to the ability to adapt and cope with challenges and adversity.

The families of adolescents on the autism spectrum may utilize a variety of coping strategies to manage the challenges they face. These coping strategies may include seeking support from family and friends, utilizing community resources, engaging in self-care activities, and adopting a positive mindset.

Resilience is also an important factor in managing the challenges associated with having a child on the autism spectrum. Resilient families are better able to adapt to changing circumstances, to manage stress and adversity, and to maintain positive relationships. Resilient families also tend to be more optimistic and have a sense of purpose and meaning in their lives.

There were studies that underscore the importance of adaptive coping strategies in managing the challenges faced by families with adolescents with autism. McNerney and Sullivan (2018) highlight that family resilience supported by strong social networks and community resources significantly enhances a family’s well-being and effectiveness in dealing with autism-related issues. Smith and Greenberg (2020) further illustrate that family-centered support programs substantially improve coping by providing tailored interventions that enhance communication, stress management, and resource access.

Davis and Gunter (2022) reveal that proactive coping strategies such as seeking information and engaging in problem-solving are associated with lower stress and higher parental satisfaction while avoidance and disengagement can increase stress levels. Brown and Williams (2023) add that technology-based interventions like applications and online resources offer valuable tools for enhancing coping strategies and providing practical support to families.

Additionally, Zhang and Kim (2024) explore cross-cultural variations in coping mechanisms and their impact on family quality of life. It showed that culturally adapted interventions can further improve coping outcomes. Collectively, these studies highlight the need for diverse and adaptive coping mechanisms and structured support systems to enhance both parental well-being and developmental outcomes for adolescents with autism.

Receiving a diagnosis of autism spectrum disorder (ASD) for their child can be incredibly challenging for parents as it signifies that their lives will differ significantly from their expectations. Daily life with a special-needs child presents numerous unique challenges. Research has consistently shown that parents of children with ASD often experience elevated stress levels compared to parents of children with typical development or other disabilities. This stress is compounded by various aspects of daily family life such as managing challenging behaviors, dealing with economic strain from reduced working hours, and diminishing social and family life.

The study by Smith et al. (2022) in “The Impact of Child Behavior Problems on Parental Stress and Family Quality of Life” revealed that child behavior problems and parental stress are significantly linked and negatively affected quality of family life. This highlights the importance of addressing these factors in interventions designed to support families. Additionally, the research by Jones et al. (2023) entitled “Stress and Coping Mechanisms Among Parents of Children with Autism Spectrum Disorder” demonstrated that parents frequently report high levels of stress and mental health concerns related to managing complex needs and navigating multiple service sectors. This study emphasizes the substantial caregiving responsibilities including behavior management and the need for comprehensive support systems to balance family well-being.

Having a child with autism affects various aspects of family life including housekeeping, financing, balancing emotional and mental health of parents, keeping marital relationships, tending to physical health of family members, and keeping up with the needs of other children within the family. It can also lead to poor sibling relationships, strained relationships with extended family, friends, and neighbors, and reduced participation in recreation and leisure activities. A study by Weiss et al. (2021) said that children with autism face challenges that significantly impact family functioning which leads to increased stress and difficulty in managing daily life. Similarly, research by Davis et al. (2023) highlights that ASD creates substantial stress that affects emotional and financial well-being for all family members. Families often experience emotional exhaustion and financial strain due to the demands of managing autism spectrum disorder and its impact on family dynamics.

A study by Lewis et al. (2022) explored the effectiveness of support groups for siblings of children with autism. It was noted that siblings gained a deeper understanding of autism and helped them navigate their family dynamics more effectively. Additionally, the research done by Roberts et al. (2023) examined how parent support groups and social support systems helped alleviate stress and social isolation among parents and enabled them to connect with others in similar situations and to access appropriate resources. Support from marital partners was also identified as a significant factor in coping with stress according to Jones and Brown (2023).

The impact of the COVID-19 pandemic on families with children with ASD was explored by Nizamuddin and Wong (2022). It revealed heightened stress due to remote learning and social isolation and an increased need for virtual support services. A longitudinal study by Smith et al. (2023) examined family resilience and positive coping and found out that higher levels of resilience and positive coping were linked to better family functioning and reduced parental stress. Additionally, research by Jones and Miller (2023) investigated the moderating role of social support and demonstrated that robust support networks were essential in mitigating the adverse effects of parenting stress on family quality of life. Patel et al. (2024) conducted a randomized controlled trial assessing online support groups for parents and found that participants reported lowered stress levels and improved coping skills. A meta-analysis by Green and Adams (2024) reviewed early intervention programs and concluded that such programs not only benefited children with ASD but also significantly reduced family stress. Finally, a study by Johnson and Lee (2024) explored the influence of family dynamics on parental well-being and child outcomes. This highlighted positive family dynamics that were associated with better outcomes for both children and parents.

Overall, these studies suggest that families of adolescents on the autism spectrum may face a range of challenges related to communication, behavior, socialization, and routine. Effective interventions and support services should be tailored to address the unique needs of each family member and should prioritize building trust and rapport with families.

STATEMENT OF THE PROBLEM

The problem addressed by the study is the lack of understanding and awareness about the challenges and experiences of families who have adolescents with autism spectrum disorder (ASD) in the Philippines. There is a need to explore the unique experiences, coping mechanisms, and support systems utilized by Filipino families who have adolescents with ASD to provide a better understanding of the impact of ASD on their family dynamics and relationships. The study aims to gain an in-depth understanding of the lived experiences of Filipino families raising adolescents on the autism spectrum in the Philippines.

Specific Questions:

1. What are the experiences of Filipino families with adolescents on the autism spectrum?
2. How do families experience and navigate the transformation of their dynamics and relationships with an adolescent diagnosed with autism spectrum disorder (ASD)?
3. What approaches do families of adolescents with autism spectrum disorder employ to navigate their unique circumstances?
4. What are practical implications of this study to empower families of adolescents on the autism spectrum?

METHODS

The study employed a phenomenological method to deeply understand the meaning and essence of experiences from the participants’ perspectives. It involved 10 Filipino families with adolescents aged 10 to 19 years, diagnosed with autism. Each family had two primary caregivers and at least one adolescent with autism and one neurotypical child, totaling 30 participants. Families were recruited from community organizations, clinics, and support groups across the Philippines. Before the study began, the researcher provided detailed information about the study’s purpose, procedures, and potential risks and benefits, and obtained informed consent from all participants or their legal guardians.

DATA GATHERING PROCEDURE

Informed consent was sent to parents via email or messenger for their participation approval. The objectives of the study and what the researcher aimed to discover through the interviews were clearly explained via phone call. In-depth semi-structured interviews were conducted online or face-to-face, depending on the family’s preferences and location. The duration of the interviews ranged from 40 to 60 minutes. A recorder was used for accurate documentation with the family’s permission. Follow-up questions were asked to provide an in-depth understanding of the family’s lived experiences.

Data Analysis

The process of data analysis involved several steps. First, each family’s interview was transcribed verbatim. After transcription, the researcher narrated the stories to provide a coherent account of each family’s experiences. The researcher then immersed themselves in each family’s transcript and narrative to understand their unique stories. Significant passages in each narrative were coded to identify key themes and experiences. Meaningful segments within each family’s narrative were identified as meaning units. Themes from each family were then clustered to identify common patterns and unique aspects across different families. Finally, after clustering the themes, the researcher categorized the data into distinct groups based on these themes

RESULTS AND DISCUSSION

The study on Filipino families raising adolescents with autism, based on semi-structured interviews with ten families, highlights key themes through thematic analysis. The six categories are: “Initial Grief to Acceptance,” “Persistent Challenges,” “Family Dynamics and Sibling Roles,” “Parental Approaches,” “Community and Digital Advocacy,” and “Family Resilience and Coping.” These themes capture the emotional journey, ongoing difficulties, family roles, parenting strategies, advocacy efforts, and coping mechanisms in the Filipino context.

Discussion of Narrative Themes

Category A: The Initial Grief to Acceptance in Autism Diagnosis

Raising adolescents with autism introduces families to a journey filled with challenges and uncertainties. A powerful theme illuminates this journey—love. Love became the guiding light that offered hope amidst the complexities of autism. Within this theme, the research was able to explore how families navigate a child’s developmental journey, cope with the grief of diagnosis, and find strength through faith and acceptance. These experiences underscore the transformative power of love that helped families overcome fears and build resilience even in adversity.

Initially, many parents lacked awareness that their child may have autism. This unawareness often comes with the period of denial and confusion as they notice developmental differences of their child compared to typically developing children. Delays in speech and language acquisition, social skills, and adaptive behaviors become apparent which prompted families to seek professional guidance. This journey often led to a formal diagnosis which initiated a significant grieving process. The diagnosis felt like a shattering of dreams and expectations which triggering intense emotions ranging from sadness to fear and uncertainty about the future.

During this initial stage of grief, parents grapple with questions and profound sadness. They felt isolate and struggled with the disparity between their expectations for their child and the reality of the diagnosis. Health care providers play a crucial role in this phase because they foster a supportive environment to help families cope with the grief and uncertainty associated with the diagnosis. Through empathetic communication and providing resources, professionals can help parents understand autism and begin the process of acceptance.

Amidst these challenges, a pivotal transformation occurred for many families through the profound impact of faith and acceptance. Parents like Allan and Nelia experienced a shift in perspective by viewing their child not as a burden but as a unique blessing from God. This acceptance had become the cornerstone in their journey which enabled them to embrace their child’s differences and to find strength and unwavering commitment to their well-being.

Faith and acceptance are not instantaneous but these families evolved through ongoing experiences and reflections. As parents like Sonny and Berna navigate daily life with their children, they witness moments of growth and unique achievements that reinforced their love and acceptance. This journey often involves redefining success and celebrating small milestones that may seem insignificant to others but are monumental in the context of autism.

Effective communication, mutual support, and a shared sense of faith enabled families like Sonny and Berna’s, and Jerry’s to demonstrate resilience and determination in ensuring their child’s happiness and fulfillment. These narratives extend beyond their homes to inspire for inclusivity and advocacy towards a more supportive community. By embracing unconditional love, families can conquer their fears and navigate the ups and downs of raising an adolescent with autism (Smith & McQuade, 2021).

Community support also played a vital role in this transformative journey. Encouragement, guidance, and a sense of belonging provided by friends, extended family, and community organizations significantly contributed to these families’ resilience. Research indicates that building a supportive network of friends and that accessing community organizations significantly contributes to a family’s resilience and ability to navigate the challenges of raising an adolescent with autism (Bekhet et al., 2012).

Through love, understanding, and a strong community network, families move from initial grief to a place of acceptance and strength. They found ways to celebrate their child’s unique qualities, advocate for their needs, and build a future that embraces their full potential. This journey, though fraught with challenges, became a testament to the power of unconditional love and the transformative impact it has on families in navigating the world of autism.

Category B: The Persistent Challenges Faced by Families

Families of adolescents with autism spectrum disorder (ASD) encounter unique challenges that significantly impact their daily lives. One prominent hurdle is the financial strain associated with therapy services and assessments. These financial challenges emerge as a recurrent theme in families like Allan and Nelia’s, Cecil and Jerry’s, and Nerry and her husband as they grapple with the high costs of these essential services. Therapy services including speech therapy, occupational therapy, and behavioral therapy are often vital for the development of adolescents with ASD but they come at a substantial cost. Additionally, the long waiting lists for appointments with developmental pediatricians added to the burden, prolonged the period of uncertainty, and delayed crucial interventions.

Financial strain is a major challenge faced by families raising adolescents with autism spectrum disorder (ASD). These financial challenges significantly impacted the families’ ability to provide necessary care and interventions for their children (Papadopoulos, 2023). In addition to navigating changes in therapy and support services, addressing social, and communication difficulties and promoting independence and self-care skills, families must also contend with the financial burdens associated with raising an adolescent with ASD. These financial strains often necessitate creative solutions and sacrifices. Some parents adjusted work hours or resigned from their jobs to prioritize their child’s care needs (Smith et al., 2022; Brown & Jones, 2023).

The diagnosis of autism prompts significant adjustments in family dynamics and routines. Parents must navigate dietary changes, structured lifestyles, and tailored communication approaches to effectively support their adolescent’s development. For example, Carol’s family has had to make substantial lifestyle changes to accommodate their child’s needs. The adolescents themselves become central figures in family decision-making processes which influenced daily activities and long-term plans as seen in Teddy’s family. These adjustments involved changes in diet, lifestyle, and communication approaches aimed to support the child’s development and well-being (McStay et al., 2015). Adolescents with ASD often assume pivotal roles in family decision-making processes by shaping the family’s structure and necessitating shifts in roles and responsibilities among parents and siblings to provide optimal support (Papadopoulos, 2021).

The COVID-19 pandemic has added another layer of complexity for families of adolescents with autism spectrum disorder. The closure of schools and therapy centers which was coupled with the economic downturn and loss of income has exacerbated the financial strains already faced by these families. The sudden shift to remote learning and teletherapy has further complicated the situation which highlighted the need for tailored intervention services that can accommodate the unique needs of individuals with ASD (Tomeny et al., 2023). For many families, the pandemic meant a disruption in their children’s routines which is particularly challenging for adolescents with ASD who thrive on consistency. This disruption often led to increased meltdowns and heightened anxiety and marked the need for an even more urgent accessible support.

Another significant challenge is the adequacy of special education teachers in public schools who handle children with special needs. Often, these educators are overburdened and under-resourced which impacted the quality of education and support provided to students with ASD. Families frequently report that the special education system was ill-equipped to meet the diverse and intensive needs of their children which led to gaps in learning and development. This inadequacy is further highlighted during the pandemic as the transition to online learning has exposed the limitations of the system in providing individualized and effective remote education.

The challenge of accessing necessary resources and support for adolescents with ASD has become even more daunting in the wake of the pandemic. Disrupted routines and exacerbated meltdowns, as experienced by Sam and Teddy, necessitate proactive communication with educators and peers to facilitate successful transitions in going back to school life as demonstrated by Nica’s efforts. The narratives provided in this study echoed the findings of Solera and Devaras (2019) who illustrated the challenges faced by families raising adolescents with autism. These challenges include financial constraints which limited access to necessary therapies and support services. Families like Allan and Nelia’s, Sonny and Berna’s, and Precy’s demonstrated the struggles associated with affording therapy and accessing essential resources. Their stories highlight the critical need for tailored support and for accessible services to address the diverse needs of individuals with autism. Also, the narratives emphasize the importance of collaborative efforts between families, mental health professionals, and social institutions such as government agencies to overcome these challenges effectively. By working together to provide support and resources, families can better safeguard the well-being and cand foster the development of adolescents with autism which are aligned with the conclusions drawn from Solera and Devaras’ study.

Effective collaboration can help mitigate financial strains, reduce waiting times for essential services, and ensure that special education teachers are adequately trained and supported to handle the needs of children with ASD. This comprehensive approach is crucial for enabling families to navigate the persistent challenges of raising adolescents with autism—particularly in the context of the ongoing pandemic.

Category C: The Family Dynamics and Sibling Involvement in Autism Care

Families managing autism spectrum disorder (ASD) highlight the crucial role of trust and collaboration with mental health professionals. Parents like Allan and Nelia, Sonny and Berna, and Nica express gratitude for therapy, which significantly impacts behavioral management and the well-being of adolescents with ASD.

Sibling involvement evolves from initial confusion to mature acceptance and responsibility. Siblings like Joy, John, and Frances demonstrate empathy, understanding, and patience. Younger siblings transition from confusion to appreciation of their sibling’s unique needs, while older siblings often assume protective roles. Parents encourage a balance between caregiving and personal development, ensuring siblings are not overburdened.

Parental support, open communication, and collaboration foster a supportive environment. Families prioritize well-being, actively engage in therapy and education, and maintain transparent dialogue. Sibling support is integral, showcasing growth, resilience, and compassion.

This dynamic ensures adolescents with autism develop independence, reducing future caregiving pressure on siblings. The journey from confusion to acceptance among siblings, guided by parents, underscores the enduring power of love and support in navigating autism care.

Category D: The Parental Approaches in Guiding Autism Across Adolescence

Parenting adolescents with autism presents unique challenges that require tailored strategies. Clear communication is crucial for addressing the emotional and social needs of adolescents, as seen in how Nelia and her husband navigated puberty discussions with their son, Renz. Consistency in discipline and structured environments are vital for managing behaviors, with families like Sonny and Berna’s implementing rules and fathers like Jerry using firm yet fair approaches. Adapting to changing needs, such as sensory processing issues and hormonal shifts, is important, as demonstrated by adjustments in routines for Sam and additional guidance for Jon’s social development. Additionally, fostering independence and life skills is a focus for many parents, helping their children prepare for adulthood despite uncertainties about academic and career paths. Overall, these approaches emphasize the need for understanding, consistency, and support to guide adolescents with autism through their developmental stages.

Category E: The Community- based and Digital Advocacy Support in Autism Care

In the digital era, social media platforms and online communities have become crucial for families raising adolescents with autism. These spaces offer support, education, and advocacy, empowering families in their unique journeys. The isolation often felt by these families can be alleviated by the understanding and emotional support from neighbors and relatives, reflecting the adage that “it takes a village”—a sentiment that rings even truer for families dealing with autism.

Active participation in these digital communities allows parents to contribute to broader awareness and understanding. For instance, one parent emphasized the importance of educating family members, while another used a YouTube channel to share their sibling’s experiences with autism. Facebook groups also serve as vital resources, where parents exchange experiences and provide support, further enhancing community knowledge and empathy.

The COVID-19 pandemic underscored the importance of these online networks. With the closure of schools and therapy centers, digital platforms became essential for accessing information, support, and teletherapy services. These platforms not only offered a lifeline during a challenging period but also highlighted the need for tailored interventions.

Education through online resources empowers families to better support their children. Parents collaboratively research and apply knowledge, often using digital tools to enhance their understanding and management of autism. This collective effort and engagement in online advocacy contribute to a more inclusive and supportive environment, demonstrating how digital communities can turn awareness into impactful action.

Category F: The Family Resilience and Coping Strategies in Raising Adolescents with Autism

Exploring how families navigate and create meaning within their bonds offers valuable insights into supporting adolescents with autism and fostering a sense of belonging and purpose. Families raising adolescents with autism often find joy and hope in celebrating small achievements, using optimism as a guiding principle amidst uncertainty. For instance, Allan and Nelia view each moment with their son Renz as an investment in his future independence, while Celia finds joy in her son Ian’s growth despite challenges. Nica and her husband prioritize their son’s present needs and development, reflecting a commitment to cherishing each moment. Vico’s family embraces small victories with resilience and faith.

Spiritual resilience and acceptance play a crucial role in navigating challenges. Families like Nerry’s and Evan’s find strength in their faith, trusting in divine intervention and deriving joy from their child’s happiness. This acceptance fosters humility and gratitude, anchoring them in hope.

Self-care and coping strategies are essential for sustaining support and resilience. Carol, Elsa, Peter, and Jane emphasize the importance of personal well-being, balancing caregiving with self-care to navigate burnout and maintain effective caregiving.

Understanding family dynamics in this context highlights the complex interplay of joy, faith, and self-care in creating meaning and resilience. By celebrating achievements, finding spiritual comfort, and prioritizing personal well-being, families demonstrate remarkable resilience and effective coping strategies in raising adolescents with autism

Conclusion

The lived experiences of Filipino families with adolescents with autism reveal a complex tapestry of resilience, love, and unwavering commitment. Despite the myriad challenges, these families found strength in faith in God, hope in small achievements, and sense of purpose in their caregiving roles. Their stories underscore the importance of supportive communities, accessible services, and need for ongoing research to better understand and support their unique journeys.

By shedding light on these experiences, this study aims to foster a more inclusive and understanding society where the needs and strengths of individuals with autism and their families are recognized and valued.

RECOMMENDATIONS

For Future Research: As the understanding of autism spectrum disorder (ASD) continues to evolve, it becomes increasingly important to conduct comprehensive research that explores the long-term outcomes and experiences of individuals with autism and their families.

Longitudinal Studies: Conduct longitudinal studies to track the long-term outcomes and experiences of adolescents with autism as they transition into adulthood, focusing on factors such as education, employment, and social integration.

Comparative Studies: Explore the efficacy of different intervention approaches in improving outcomes for individuals with autism and their families, comparing outcomes across various support models and interventions.

Qualitative Studies: Conduct qualitative studies to investigate the perspectives and experiences of adolescents with autism themselves, providing valuable insights into their lived experiences and needs.

For Future Actions: Addressing the needs of adolescents with autism spectrum disorder (ASD) and their families requires a multifaceted approach that encompasses policy advocacy, training, and support services, inclusive education practices, community engagement, parent empowerment, healthcare access, employment opportunities, medication regulation, and research funding.

Policy Advocacy: Advocate for policies and legislation that promote the rights and inclusion of individuals with autism, including increased funding for special education programs and initiatives to combat stigma and discrimination.

Training and Support Services: Develop and implement comprehensive support services tailored to the needs of families raising adolescents with autism, including counseling, respite care, and parent training programs.

Inclusive Education Practices: Promote inclusive education practices in schools and educational institutions, ensuring access to additional support staff, sensory-friendly environments, and individualized learning plans.

Community Engagement: Collaborate with NGOs and community organizations to create support networks and community-based programs for adolescents with autism, focusing on social skills development, recreational activities, and vocational training opportunities.

Parent Empowerment: Develop empowerment programs to provide parents with the knowledge, skills, and resources needed to advocate for their children and navigate the challenges of raising an adolescent with autism.

Healthcare Access: Improve access to healthcare services for individuals with autism, including mental health support and interventions to address co-occurring conditions such as anxiety and depression.

Employment Opportunities: Create job opportunities and vocational training programs specifically designed for individuals with autism, partnering with disability-inclusive businesses and providing support for workplace accommodations.

Medication Regulation: Ensure responsible prescribing and administration of medications used to regulate the behavior of individuals with autism, with careful consideration of potential side effects and long-term impacts.

Research Funding: Allocate increased funding for research into autism spectrum disorders, focusing on understanding the unique needs and experiences of adolescents and their families to develop more effective interventions and support services tailored to this population.

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