by Sahara Dhakal Kafle

The moment we held our precious newborn daughter, our hearts overflowed with joyful dreams of the life ahead. We pictured her sweet giggles resounding through our home as she discovered the wonders of the world. Her first utterance of “Mama” would be a precious milestone, one we longed to hear, but fate had a different plan for our precious one, a path we hadn’t imagined in our parenthood dreams.

Instead of the anticipated joy, we were met with a poignant silence, a hush that seemed to echo through the empty rooms of our home. We witnessed her struggle to convey emotions, to express her feelings, to speak simple words; it was a heartrending revelation we never saw coming. She was diagnosed with “Autism”.

Despite our background in the medical field, the signs of this neurological disorder eluded us until it emerged as a significant aspect of our daughter’s life. As parents, we experienced a range of emotions, from denial, anger and questions of “why us?”to hidden depression and a strong desire to find a way to “quick fix” her. However, we soon realized that there is no easy medication fix or swift solution and helping her adapt to a world primarily designed for neurotypical individuals would be a sustained long-term commitment.

Dear readers, cradle my words in your hearts for they carry us on a tender journey into the lives of mothers navigating the complexities of raising an autistic child (neurodivergent) in the context of Nepal. I emphasize the voice of “metropolitan autistic mothers” because I come from the capital city of Kathmandu where there exists a comparative degree of tolerance, awareness and understanding of autism. Unfortunately, in the remote corners of our country, the hurdles and challenges for autistic children and their parents are magnified.

Autistic parents often face discomforting stares and judgmental reactions when their children exhibit stimming or sensory issues in public. Neurotypical parents may find it challenging to comprehend this behaviour due to a lack of understanding or awareness. Some have gone as far as requesting schools to segregate or remove autistic children fearing their children might imitate them, mistakenly believing autism to be contagious. These challenges highlight the need for greater awareness and understanding because it not only isolates the family but also shatters the hope of growing autistic children to be part of a society where support and recognition are already scarce.

In Nepal, a concerning lack of awareness and understanding surrounds autism, with the condition often mistaken for intellectual issues or mental retardation. Despite strides in various sectors, accurate knowledge about autism remains limited within the Nepalese population. This prevailing misconception hampers efforts to provide appropriate support and resources to individuals with autism and their families. In the government’s view, since sensory perceptions and physical abilities are intact in these children, they are perceived as ostensibly similar to any other, which unfortunately leads to a failure to recognize it as a distinct concern.

Autistic children, like their peers, should have the chance to experience the joys of laughter and play alongside their peers.This inclusive environment allows them to observe and imitate behaviours, fostering a sense of belonging and social development. Sadly, and unfortunately,they are barred from this fundamental experience simply because establishments such as Montessori schools fail to extend their embrace to children who are neurodivergent. Almost all widely opened kids’ schools and Montessori lack the resources, trained personnel, and supportive infrastructure to accommodate the unique needs of autistic children. It is disheartening to note that none of the widely opened Montessori schools possess adequately trained personnel equipped to provide the specialized care of these children. The government and even private schools should seriously prioritize developing and implementing inclusive education policies and provide necessary training and support for educators.

As a mother, my heart aches recalling the numerous distressing moments of sending her to Montessori schools. Her delicate face reddened and burnt from hours under the summer sun on the swings. Her tiny toes were lacerated and bloodied from unrestricted running. Painful rashes flared across her bottom from diapers as she struggled to communicate her need for a change. Being non-verbal, my daughter depended on me as her voice.

The experience above isn’t limited to me; it mirrors the concerns of numerous autistic parents who worry about their child’s safety in the care of staff lacking the necessary expertise or comprehension of autism. We fear these caregivers may face difficulties interpreting nonverbal cues and averting unintentional fixations that could worsentraits and behaviour in autistic children. All that’s needed is one trained staff in each Montessori who can understand the subtle clues and help these kids with necessities and requirements.

Realizing that Montessori schools may not adequately cater to my children’s needs, I explored other options. As a student and working mom, many recommended special schools or therapy centers, but I encountered my own challenges, especially with therapy and rehabilitation centers.

In any service-oriented centers or businesses, the moment profit takes precedence over service, their effectiveness inevitably dwindles. Unfortunately, this trend persists in autism therapy centres because many parents, like myself, often find themselves in a situation where they have no choice but to accept the available options. It’s equally disheartening that these vital professional assistance and therapies often remain financially inaccessible for the majority of parents. For one who can afford it, there’s uncertainty surrounding our child’s progress, which may stretch over months or even years, leaving us with limited alternatives in this challenging situation.

In Kathmandu alone, numerous centers are offering Parent-Child Training Programs (PCTP). However, what’s notable is that each of these centres tends to impose its distinct assessment fees before initiating treatment; any assessments conducted by other centres or doctors are often not considered valid. This situation underscores the need for a more unified and accessible approach to services for families seeking support for children with autism.

It is crucial for therapists to undergo extensive training and accumulate experience in order to customize their methods to meet the distinct needs of children with autism; without this, substantial progress may continue to be out of reach.As autism is a spectrum, it is clear that there is no one-size-fits-all approach.

The absence of compassionate, affordable care and the lack of recognition and initiatives from the government compel numerous families with children with autism to endure their struggles in silence. The government must recognize autism as a crisis and develop specialized training, services, and integration support so these children can thrive as valued members of society.

I hope that sharing this story will shed light on the arduous journey ahead in supporting these special children and their dedicated parents across the nation. It is our aspiration that through increased awareness, government attention, and a greater understanding from the public, we can collectively pave the way for more inclusive and compassionate communities.

To all the parents of autistic children, let’s unite our voices in advocating for the rights of our kids and their rightful place in society. You are not alone, and remember, you are one of the strongest moms and dads, fighting tirelessly for your children’s rights and their rightful place in society.

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