Iran Autism Association

Digital Magazine

Strong

Shoulders

Autumn 2025

Issue 1

  • Editorial
  • Who We Are, What We Stand For
  • Forgotten Fathers
  • The Cigarette Pack Story
  • Autism News
  • IAA Achievements
  • Collaboration Opportunities

CONTENTS

EDITORIAL

strong Shoulders: The Hidden Heroes

of Autism Families

Sometimes, the greatest heroes are not those who stand in the spotlight, but the parents who quietly carry the weight of love, responsibility, and endless challenges.

For families living with autism, life is not simply about therapy sessions or educational programs. It is a journey filled with acceptance and resilience, but also with exhaustion, financial pressure, and moments of deep loneliness Parents often find themselves navigating a health system that does not fully meet their needs, schools that are not always prepared, and a society that still struggles with understanding and acceptance.

Yet within all these difficulties lies a story of unwavering love. Each father and mother learns sometimes the hard way, how to be patient beyond measure, how to discover joy in the smallest progress, and how to remain hopeful even in the most uncertain times.

This special issue is dedicated to those parents:

the strong shoulders upon which children lean, families survive, and communities learn what true devotion means.

Through their stories, we aim not only to shed light on the struggles and needs of autism families, but also to celebrate their courage and the quiet strength that holds everything together. With each monthly issue, our magazine will continue to highlight these voices, explore new themes, and share both challenges and achievements, so that together, we can build a stronger, more supportive community for families living with autism. In every issue, we dedicate a section called Special Feature to tell a story that goes beyond statistics and programs. This month, under the title The Gray Routine, we walk alongside a family through the rhythm of their everyday life with autism, its struggles, its quiet victories, and its unspoken strength.

WHO WE ARE,

WHAT WE STAND FOR

The Iran Autism Association (IAA) is a non-governmental, non-profit organization with consultative status at the United Nations ECOSOC.

It is dedicated to supporting individuals on the autism spectrum and their families through rehabilitation, education, advocacy, research, and community engagement.

Since its establishment, IAA has worked to:

  • Empower families through training, counseling, and access to resources.
  • Raise public awareness and reduce stigma by promoting understanding and acceptance of autism in Iranian society.
  • Advocate for rights by engaging with government bodies, international organizations, and civil society to ensure inclusion, equal opportunities, and social justice.
  • Promote research and innovation in autism care, rehabilitation, and education.
  • Foster international collaboration, building partnerships with leading autism centers, universities, and NGOs worldwide.

What we stand for is simple yet powerful: equity, dignity, and inclusion for every individual with autism. we believe that no family should ever feel alone and that by working together, we can turn challenges into opportunities, creating a more inclusive and compassionate future for all.

SPECIAL FEATURE;

THE GRAY ROUTINE

Life in Cigarette Packs: A Mother’s Story of Autism

In 1989, when Mehrdad was born, he was just two months younger than his cousin. From the very beginning, every step he took was measured against hers; she walked earlier, talked earlier, kept moving forward, while Mehrdad did not. The elders would say, “Boys talk later; boys walk later. Don’t worry.” But a worried mother’s heart never truly rests.

Back then, we were living in Kermanshah. My parents were in Tehran, and whenever I could, I took Mehrdad there to see a doctor. But it was wartime, and resources were scarce. CT scans were reserved almost exclusively for the war-wounded; no matter where I went, I couldn’t get a scan of Mehrdad’s brain. At the time, speech therapy was virtually unknown.

A few years later, we moved to Tehran. That was where I first heard the words: “Mehrdad has autism.” At first, I felt a strange relief. I thought it was just the name of a simple illness. But when I learned that autism meant a collection of every hardship imaginable, the nightmare truly began.

As a child, Mehrdad always lived in his own world. One day he would collect phone cards; another day, batteries. Sometimes he pulled newspapers from under the carpet, lined up the new ones neatly, cut out pictures, and pasted them into a notebook. Each time, he pursued something with a mix of passion and meticulous precision. And sometimes those passions brought us trouble. I remember when he became obsessed with lighters; once, he asked a taxi driver for his lighter right there in the street. It escalated: tears, an argument, a crowd, the police and in the end, Mehrdad was beaten. That was the end of his fascination with lighters.

But today, he has a new obsession; cigarette packs.
On the street, he searches for them around trash bins. People assume we’re scavengers. Sometimes I feel the weight of their stares, each carrying a thousand judgments. But Mehrdad, without a second thought, picks up the packs, brings them home, and sets them in a special spot that one no one is allowed to touch.

To others, these empty packs are nothing but trash.To him, they are sanctuary. To him, each one is a small world that calms his restless mind. Over the years, I’ve learned that these packs are not just crumpled paper; they’re a bridge between the world that feels ordinary to us and the one that feels chaotic and strange to him.

When I watch him lining the packs up side by side, it sometimes feels as if they’re telling the story of our whole life.

Each pack carries a trace of years of struggle; from failed attempts to find a school or treatment, from the judgmental stares of strangers, from our helplessness. At the same time, each pack is also a trace of hope: the hope he has found to survive, the path his mind has created to endure in this difficult world.

Today, if someone were to ask me what life with Mehrdad is like, I would say:
Our life is like these cigarette packs;empty, fragile, seemingly worthless; yet to the one who has chosen them, they are the whole world.

Forgotten Fathers

Silent Struggles: Fathers in the Shadows of Autism

*Farah Bakizadeh, M.A., Clinical Psychology*

Becoming a father is a significant milestone in a man’s life, profoundly shaping his identity and significantly influencing his mental well-being. With the birth of a child, men take on new roles and responsibilities in the family. Fatherhood brings joy and satisfaction, yet it also brings stress and emotional strain. When a child is born with a disability and needs more care, anxiety and distress increase, and quality of life is profoundly affected.

Research shows that fathers of children with autism spectrum disorder (ASD) experience higher levels of distress than fathers of typically developing children, and even higher than fathers of children with other neurodevelopmental conditions. In a study comparing the psychological well-being of fathers of children with ASD, Down syndrome, and fragile X syndrome, fathers of children with ASD reported the highest levels of depression. Fathers also describe intense stress during their child’s treatment, along with feelings of failure, self-blame, and doubts about meeting their commitments as “good fathers.”

Studies consistently show that mothers and fathers experience parenting differently. They interact with children in distinct ways, assume different caregiving roles, and employ various coping strategies. Among parents of children with ASD, mothers and fathers also report different experiences, perceptions, needs, and mental-health profiles. Despite these differences, most studies have focused on mothers as primary caregivers, and we know comparatively little about fathers.

To address that gap, we conducted a qualitative phenomenological study of the lived experience of fathers raising adolescents with ASD. This work was completed as a master’s thesis in clinical psychology at the University of Tehran, in collaboration with the Iran Autism Association, during 2021–2022 (1400–1401). Through in-depth interviews with fathers of children aged 11–18, we explored their experiences from diagnosis through adolescence: the impact of autism on mental health, employment and income, marital and family relationships, and the barriers and facilitators they perceived over time. Using Giorgi’s phenomenological approach, we derived eight overarching themes and twenty-seven subthemes. Below is an integrated summary to guide specialists and responsible organizations in providing services tailored to fathers’ needs.

Recalling the early days after diagnosis was difficult for all participating fathers, marked by tight throats, tears, and long silences. Many called it the bitterest period of their lives. One father said:

   “This is where the dizziness began. It was as if I’d been struck, like a strange, disorienting slap! And a one-sided one at that; the balance never set, and you lose your own equilibrium. The blow is so, so, so overwhelming at first that by the time you come to yourself and try to break free from the daze, you find yourself at a point where it feels as though you no longer even have a life.”

The ambiguity and unfamiliarity of what they are confronted with, the lack of awareness and understanding of the path ahead, and the collapse of the hopes and dreams they held for their child and family, bring fathers into states of anxiety and depression. These conditions, while threatening their mental health and, consequently, their physical well-being, are often ignored by the fathers themselves, their families, and even specialists and therapists. The prevailing notion that fathers are unshakable walls, and the pressure to embody an image of invulnerability both for themselves and society, prevent them from seeking professional help. The consequences of this neglect harm not only the fathers but also their families. One father described his experience in these words:

   “You could say I’d forgotten that tears even exist, that crying exists; I don’t know, even that desires exist. This endurance, this patience, at some point started to crack and show itself, and you just can’t escape it. You begin to fracture on the inside while outwardly showing that you’re still standing firm. Well, I tried to keep myself on my feet so I could handle things, but everyone should know that fathers, too, can reach a breaking point. They can collapse completely. It’s not as though the world should expect a man to simply lean against the wall and endure until he dies.”

The way fathers respond to a diagnosis, and the extent to which they are affected by it, is significantly influenced by the specialist who first communicates the diagnosis to the parents. Fathers frequently reported that an unpleasant experience during this encounter, receiving the diagnosis delivered without empathy and without adequate information, made the situation even more difficult. It is therefore essential for specialists to be familiar with professional guidelines on how to deliver such diagnoses to parents, and to provide them with reliable resources for obtaining information and seeking support for the journey ahead.

Changes in marital and emotional relationships, family routines, and parental responsibilities are widespread, ranging from the most basic aspects of life, such as mealtimes and the kinds of food served at home (given the dietary restrictions and challenges of children), to altered patterns of sleep and wakefulness. All of these require parents to remain flexible in adapting to the new circumstances. In many households with autism, emotional distance between spouses, increased conflicts, and tensions both between the parents themselves and with other children are common. One father described his experience this way:

   “Our relationship became like the North Pole. And what does the North Pole mean? We became so consumed with our child that we forgot about ourselves. Now, when I speak to my wife, it’s only: ‘Hello, how are you? Did you take care of his lessons?’ And that’s it. But what about me? You see, all our focus has to be on him.”

Another factor contributing to the distance between parents is the lack of opportunities to spend time together. One father in the study described it this way:

   “There’s no one who can take care of my child so that my wife and I can go to a restaurant together, because no one can really handle it. Or, for example, when it comes to traveling, which every human being needs, we end up going separately. Either I go, or my wife goes. Rarely, we travel together. This isolation is really overwhelming, and it disrupts life at its core. And there’s no one to step in and help, not an organization, not an institution. If I say, ‘It’s our anniversary, I’d like to go to the cinema or even just a restaurant with my wife, could someone watch my son for two hours?’ there’s simply no one.”

Research shows a bidirectional relationship between marital conflict and autism symptoms: as marital disputes and household tension increase, the severity of autism symptoms also tends to rise. Conversely, as autism symptoms intensify, the psychological pressure on parents grows, leading to greater tension between them. Therefore, family therapy delivered by professionals who are knowledgeable about the unique circumstances of families living with autism should be considered an essential component of the treatment plan.

Changes in a family’s economic circumstances—such as reduced income caused by mothers leaving the workforce, increased absences from work, and the soaring, uninsured costs of treatment—place significant financial strain on families of children with autism. Fathers often feel personally obligated to shoulder this burden, since one of their perceived core roles is to be the breadwinner and provider. This heightened sense of responsibility drives them to devote more time and energy to meeting economic demands, which in turn reduces their participation in caregiving.

This even greater sense of responsibility compels them to devote more time and energy to meeting economic demands…

The resulting increase in psychological strain on mothers creates a harmful cycle of imbalance that undermines the family structure. Breaking this cycle requires external intervention, particularly through national health and social organizations capable of helping families manage the financial challenges of autism care.

A recurring theme was fathers being blamed for not participating in their child’s rehabilitation and therapy programs. One of the roles fathers identified for themselves was taking responsibility for fostering their child’s personal independence and social skills. According to the fathers, tasks such as speech therapy exercises, occupational therapy routines, and school assignments are typically carried out by mothers. Fathers expressed that they often struggle to engage effectively with such task-based, home-centered activities. Instead, they place greater value on activities that promote their child’s independence in daily living and enhance social interactions outside the home. Nevertheless, most rehabilitation protocols remain task-oriented and primarily designed around the roles and characteristics of mothers. This underscores the need for research and program development that design rehabilitation approaches aligned with fathers’ strengths and perspectives, particularly those that emphasize the child’s independence and autonomy.

As time passes and parents become more familiar with the characteristics of autism, the onset of adolescence brings another wave of turmoil into the household. The growing responsibilities of the parent of the same gender as the child with autism, alongside the child’s shifting needs, make it essential for parents to adapt flexibly to evolving roles and responsibilities during this stage. Fathers also highlighted the lack of specialized training and the persistence of misconceptions regarding puberty in children with autism as major concerns during this period. Therefore, relevant institutions must place greater emphasis on providing families with accessible, specialized education and reliable guidance to help them navigate this transition.

Despite the onset of internal collapse experienced by fathers following the diagnosis, family life for children with autism does not come to an end; rather, it continues in a new form. In this context, fathers identified certain factors as “life’s scaffolds” during the early days and years after the diagnosis, elements that played a crucial role in maintaining the stability and resilience of their family life.

Finding meaning and redefining autism for themselves was one of the strategies fathers employed. This process of meaning-making—whether through religion, spiritual beliefs, or focusing on their children’s unique abilities, helped them moderate the perceived developmental challenges of their child and make life with autism more acceptable. The meaning fathers assign to autism varies according to each individual’s cultural, social, economic, and religious context, and differs from one father to another. Regardless of the type of meaning or perspective shaped by their child’s condition and abilities, this process of meaning-making plays a crucial role in their acceptance of and adaptation to the new circumstances. Therefore, it is essential that social workers and counselors be present alongside fathers at the time of diagnosis to support them in finding meaning and redefining autism.

Another important supportive factor is the presence of caring individuals, who serve as stabilizing forces for fathers and family members during the initial stage of emotional collapse. This support can come from specialists, therapists, family members, or the broader community. A key emphasis of the present study was the importance of understanding the unique circumstances of families with autism and approaching them with empathy.

One particularly important and impactful concern for fathers was that friends and acquaintances not attribute their child’s behaviors, developmental delays, or other issues arising from autism spectrum disorder to poor parenting. In other words, being judged as responsible for their child’s behaviors due to inadequate caregiving is deeply distressing and adds an additional burden. Fathers already carry constant, internal worries about the quality of their parenting. They dedicate themselves around the clock to caring for their child and providing the best possible support, yet due to the challenges associated with autism, these efforts sometimes appear to yield little tangible result.

Engaging in personal activities and having time for hobbies as a means of self-recovery and creating distance from life with autism was a compensatory strategy used by fathers. These activities varied according to each individual’s age, culture, and interests, but they shared a common purpose: providing a break from the demands of autism-related care. Although fathers reported that opportunities for private leisure time were very limited, they considered such spaces essential for mental respite and for managing life’s challenges effectively, highlighting the need for planning in this area. Access to safe, high-quality childcare facilities, whether for daily or hourly care, was especially emphasized as crucial for fathers, particularly those who are divorced, to ensure they have personal time.

Having a job, maintaining connections with life outside the home, engaging with other social groups, and being away from the autism-centered environment at home were other factors that fathers identified as helpful for restoring themselves before returning to the demands of home life with autism. However, an important consideration is the flexibility of the job. Employment outside the home supports fathers’ mental health most effectively when it allows for flexible hours and when managers, colleagues, and organizational policies understand the father’s unique needs. Other studies have also shown that part-time employment with full pay can play a significant role in preserving mental well-being, supporting the family’s financial stability, maintaining marital relationships, and improving the overall quality of life for families of children with autism.

The findings of this study indicate that fathers experience significant confusion and challenges across various aspects of life, from managing the behavioral and emotional symptoms of a child with autism spectrum disorder to navigating marital relationships and sibling dynamics. Given the crucial role fathers play in supporting maternal mental health, maintaining family stability, and promoting the development of a child with autism, it is essential to pay greater attention to their needs and psychological well-being. This underscores the importance of developing targeted educational programs and specialized protocols tailored to fathers’ circumstances, to be implemented by researchers, specialists, and therapists.

FORGOTTEN

FATHERS

AUTISM NEWS

Safer Homes, Calmer Hearts: The Autism-Safe Home Initiative

For many families living with autism in Iran, home should be a place of comfort and safety. Yet hidden risks, like unsecured balconies, faulty wiring, or unsafe storage of flammable materials, often turn that comfort into constant worry.

To change this, the Iran Autism Association (IAA), in partnership with the Tehran Fire Department, has launched a pioneering initiative: the Autism-Safe Home Initiative. For the first time in the country, homes of autistic adults with high support needs were assessed and transformed to become not just safer, but more reassuring and inclusive.

During the pilot phase, experts worked hand-in-hand with families, walking through living spaces and addressing potential dangers. Balconies that once caused concern were secured. Gas and electrical systems were carefully inspected and repaired. Everyday hazards were removed or stored safely. Families also gained practical knowledge on how to make small daily changes that add up to lasting protection.

But the impact reached far beyond bricks and wires. Firefighters received specialized training to better understand autism-specific needs, ensuring that in times of crisis, they could respond not only with technical expertise but with empathy and awareness.

The response was powerful: families spoke of a new sense of calm and preparedness, while emergency responders discovered that true safety is not just about procedures, it is about knowledge, compassion, and human connection.

“The Autism-Safe Home Initiative is more than a project; it is a statement that no one should be left behind, and that safety must always include understanding.” Iran Autism Association

This initiative sets a strong example for communities worldwide: when safety and empathy come together, homes and lives become truly secure.

IAA ACHIEVEMENTS;

From Barriers to Breakthroughs

In this issue, two impactful initiatives that emerged from a crisis and became lasting
solutions are highlighted:

Telerehabilitation: The idea of the Telerehabilitation Program was born in the midst of the COVID-19 pandemic, when lockdowns and distance made it nearly impossible for many families to access vital rehabilitation services. In response, the Iran Autism Association, in partnership with the World Health Organization (WHO) and the Ministry of Health and Medical Education of Iran, developed an innovative solution: delivering specialized care directly into families’ homes through online platforms.

Today, this initiative has grown far beyond its initial emergency response. It now stands as a permanent, transformative program that empowers families with consistent, high-quality support. This program has opened the door for families to access specialized speech therapy, occupational therapy, and behavioral therapy online, affordable, accessible, and effective. It is especially vital for families living in underserved or remote areas where rehabilitation specialists are scarce, as well as for those facing financial constraints or difficulties in traveling to clinics.

The results have been remarkable. Over the past year alone, the program has delivered more than 7,500 online rehabilitation sessions to over 160 children with autism, supported by a team of more than 15 expert therapists. Beyond the numbers, it has helped children and families build skills, gain confidence, and experience a better quality of life.

What began as a response to a global crisis has now become a model of equity, inclusion, and innovation, proving that technology can bridge gaps, reduce inequality, and create lasting change. The Telerehabilitation Program is not only transforming lives in Iran, but also offering hope and inspiration to autism communities worldwide.

Helpline: Across Iran, thousands of families pick up the phone every day with questions, worries, and hopes. On the other end of the line, a calm and reassuring voice responds—listening, guiding, and reminding them: “You are not alone.”

The Autism Helpline, established by the Iran Autism Association in 2020 and expanded in 2022 with support from the World Health Organization (WHO), has become one of the most trusted, accessible, and cost-effective sources of autism-related support in the country.

Staffed by trained professionals with both clinical expertise and deep cultural understanding, the Helpline answers real-life questions from families, including:

  • Are these the early signs of autism?
  • Which schools and centers are autism-friendly?
  • How can we manage puberty or challenging behaviors?
  • What rights and services are available for families?

The numbers speak for themselves: in Spring 2025 alone, more than 5,000 calls were received from every corner of Iran. But behind every call lies more than just information—it is about offering empathy, relief, and hope to caregivers who often feel isolated.

“No question should go unanswered, and no family should feel alone.”  Iran Autism Association

Today, the Autism Helpline is more than a phone service, it is a national symbol of solidarity and inclusion, reaffirming IAA’s mission to empower families, raise awareness, and build a more supportive future for individuals on the autism spectrum.

COLLABORATION PPORTUNITIES

Join the Movement: Partner with IAA for Global Impact

Your knowledge and empathy can travel where funds cannot.

Join us in creating opportunities for collaboration, from scientific conferences and partnerships to rehabilitation support and training for families and therapists.

Email Contact: ic@irautism.org

NO FAMILY ALONE:

BE PART OF THE CHANGE

Partner with IAA to co-create projects in education, rehabilitation, awareness, and family support.

Your collaboration can inspire lasting change.

Email Contact: ic@irautism.org