Kanon: A school’s fight for those with autism

Nafisatul Maksuda Lopa's world crumbled the day she learned that her only child, Nafis Unmesh, had autism. 

She, a teacher in Rajbari, endured 18 tumours in her uterus, multiple surgeries and being told she might never conceive. When she finally gave birth to Nafis, it came at a cost — her uterus had to be removed to save her life. 

Nafis was her miracle child.

"I had no idea what autism even was," she confessed. "I had left my small town and moved to Dhaka [in 2010] just for his treatment, but after visiting special schools and speaking to other mothers, I lost all hope. I realised my son would never have a normal life."

Lopa came across Kanon, a school under the Autism Welfare Foundation (AWF). She not only admitted her son in 2011 but also became a teacher there.

Her despair deepened when Nafis turned 12. Despite improvements in the beginning, his condition began to worsen later. "I thought I was losing him," she admitted. 

But it was through relentless therapy and unwavering support from Kanon, Nafis made progress. 

"Now he can eat on his own, cross roads, even travel on local transports. But my only wish is for my son to be accepted in society like other children," Lopa said.

Her experience reflects the silent struggles of thousands of parents in Bangladesh. Autism, a complex developmental disorder that affects communication and social interaction, remains misunderstood in the country. 

According to the Bangabandhu Sheikh Mujib Medical University (BSMMU), nearly two in 1,000 children in Bangladesh are diagnosed with Autism Spectrum Disorder (ASD). The prevalence in urban areas is higher than in rural areas, and boys are more likely to be affected. 

A national-level study in 2013 estimated that about 47,500 people live with autism in Bangladesh today. Special schools and therapy centres are limited in Dhaka, and almost non-existent beyond the capital. 

The Autism Welfare Foundation's school Kanon in Keraniganj is one such institution, currently serving 150 children and teenagers with autism. 

The role of 20-year-old AWF 

Dr Rownak Hafiz, a child physician by training, is considered one of the pioneers in autism care in Bangladesh. Dr Hafiz's life took a different path in the mid-1990s. 

She went to Thailand and India first looking for answers for her elder daughter, Nur E Tabassum's condition. However, the hospitals there could not diagnose Tabassum. Then she went to the United States first in 1995 then soon after she took her child. In 1996, her daughter was diagnosed with autism.

Dr Hafiz received specialised training on autism from the University of Iowa in the US in the mid-1990s. Upon returning to Bangladesh in 1997, she implemented what she had learned in a mainstream school, only to be asked to stop due to complaints from other parents.

Refusing to give up, she later became chairperson of the Society for the Welfare of the Autistic Children (SWAC) in 2000. Four years later, she resigned and founded the Autism Welfare Foundation (AWF), determined to build an institution that truly served autistic children. 

Her husband, architect Masum Kabir, was instrumental in this journey. He designed and helped construct AWF's school, Kanon. 

Since its inception in 2004, the foundation has served over 970 students, helped almost 40 students pass board exams like SSC and HSC, facilitated the transfer of 79 students to mainstream schools, received 179 awards for its contributions, and provided medical care to 4,124 outdoor package patients.

With a focus on both care and inclusion, it is operated with a clear purpose, to ensure that autistic individuals have access to the necessary resources to lead independent lives. The foundation not only runs a specialised school but also conducts awareness programs, trains parents and collaborates with policymakers to improve the overall landscape of autism care in Bangladesh. 

"Kanon isn't just a school," said Anika Tabassum, vice chairperson of AWF and Dr Hafiz's youngest daughter, she added, "It's a place where children with autism receive therapy, education and care. We provide them with the experience of a regular school — because they deserve that."

On Saturdays, they run free sessions for children with autism whose families cannot afford regular classes. 

Rabeya Bashri, an occupational therapy specialist with over 12 years of experience, highlighted the importance of early intervention. "With proper care and training, autistic children can learn to live in society. Occupational therapy, speech and language therapy, physiotherapy, and psychotherapy help improve their motor skills and communication abilities."

Rabeya works at Kanon. 

Despite their efforts, the foundation faces challenges. The organisation currently operates in a four-storey building, but it was originally designed to be eight storeys. "We lack funding to complete the remaining floors," Anika revealed. 

"Our dream is to build residential hostels for autistic children, so parents, especially single mothers, can have peace of mind knowing their children will have a safe place even when they're gone," she added.

For parents like Tahmina Begum, whose 25-year-old son, Ifat, a student of Kanon, this initiative is crucial. "I found out about Ifat's autism when he was three," she recalled. "Twenty years ago, barely anyone in Bangladesh knew what autism was. When we confirmed the diagnosis, we were lost."

She turned to Dr Hafiz, who provided her with an Individualised Education Plan (IEP). "I followed it strictly, and he improved. But then he developed epilepsy, and for five years, his condition deteriorated." 

Therapy at AWF helped him regain basic life skills. "Now he can eat on his own and do simple tasks. But he's my only child, and after my husband passed away, I worry about his future. Kanon is his home — his friends, his teachers, they're his family. I just want to see the residential hostel completed before I die." She broke into tears, her voice trembling with emotion.

Lopa also expressed the same sentiment. "Parents of autistic children live with a constant fear — what happens to our kids when we're gone? That's why we need more institutions like Kanon. And we need a society that understands them."

She continued, "Most people see autistic children as dangerous, but they're not. They're just different. They deserve places to play, and to be themselves without judgment. We need parks where they can go without being stared at."

It does take a village to raise a child with autism. The combined efforts of family, parents, therapists, and special schools can help a child with autism become self-dependent, said Dr Tawhida Jahan, associate professor and former chair of the Department of Communication Disorders at the University of Dhaka. 

"Children with autism need different types of therapy. But these therapies shouldn't be limited to special schools and therapy centres. Parents should be trained to continue the sessions at home because a few hours of therapy a week is simply not enough," she concluded.