What is Autism?

Autism is a neural developmental disorder characterized by impaired social interaction and communication, and by restricted and repetitive behavior. The symptoms become apparent before a child is 3 years old. Autism affects information processing in the brain and it is not yet well-understood condition of the brain. It is said to be not curable but the symptoms are manageable with proper interventions. It is one of three recognized disorders in the Autism Spectrum (ASDs), the other two being Asperger Syndrome, which lacks delays in cognitive development and language, and Pervasive Developmental Disorder, Not Otherwise Specified (commonly abbreviated as PDD-NOS), which is diagnosed when the full set of criteria for Autism or Asperger Syndromes are not met. While physical disabilities can be seen and easily identified, Autism is ‘invisible’. ASD can sometimes be diagnosed as early as 14 months. A baby showing two or more of these symptoms might be suffering from Autism:

Impairment in social interaction

  • Lack of appropriate eye gaze
  • Lack of warm, joyful expressions
  • Lack of sharing interest or enjoyment
  • Lack of response to name

Impairment in communication

  • Lack of showing gestures
  • Lack of verbal Communication.
  • Lack of coordination of nonverbal communication
  • Unusual prosody (little variation in pitch, odd intonation, irregular rhythm, unusual voice quality)

Repetitive behaviors and restricted interests

  • Repetitive movements with objects
  • Repetitive movements or posturing of body, arms, hands, or fingers (eg.flapping hands, rotating head, flickering fingers, rocking body )
Early diagnosis and intervention is crucial in promoting a child’s development. While Autism certainly appears to be of neurodevelopmental origin, appearing early in life, it is a life-long condition. Persons with Autism need physicians and other medical support staff that understand how difficult it is to convey where pain might be or to provide answers to the usual questions in a medical examination. Furthermore, the physiological or metabolic causes of the outward behavioural indications of Autism might have heretofore undisclosed effects on other bodily systems such as the gastrointestinal or autonomic nervous systems.

Autism in Nepal

There is only one active Autism organization that provide trainings to the children with Autism and their families in Nepal, called Autism Care Nepal Society (ACNS), which was founded on 2nd April 2008 on the occasion of the World Autism Awareness Day. It is a non-profit making and non-political NGO run by passionate parents who care for persons with Autism. Initially ACSN started its work with the goal of raising awareness and providing support to parents and caretakers of children with Autism. It then extended its services through a center that would help families throughout Kathmandu and Nepal to raise awareness, provide basic therapy services and to develop knowledge base and expertize in the field of Autism. ACSN also works for the rights of the person with Autism throughout Nepal. Even though ACSN is providing services to substantial number of targeted population, there is still huge gap of service delivery due to lack of adequate infrastructure and resources, both human and material. Dr. Sunita Maleku Amatya, chairman at Autism Care Nepal Society (ACNS), stresses the need for special education for these children. Dr. Sunita, whose son is also a child with Autism, is an Anaesthesiologist. “After the diagnosis, the most challenging part for Autistic parents is how to educate their children and the government should ensure the right to education for these children.”

Although the “education to all” program was launched in Nepal in 2015, the Children with Autism are still left out to get benifited from this program in Nepal. No any private or government school would like to enroll these children with Autism in their schools in Nepal due to lack of trained teachers, lack of knowledge about Autism and lack of strong government rule for compulsury inclusive education system.

Education is a basic right for every children of every country. Autistic children would require special educational plans. It needs a multidisciplinary team comprising Art Therapists, Music Therapists, Occupational Therapists, and other trained teachers. Many parents in Nepal don’t have the knowledge or resources to take care of their children with developmental disorders. The government does not even recognise Autism when issuing disability identity cards rendering Autistic people ineligible for state sponsored monthly allowance. And when children act aggressively, have trouble communicating or interacting with others, and engage in repetitive behaviour, parents wrongly blame bad temper or poor discipline for these symptoms. As a result, hundreds remain undiagnosed or are lumped in the ‘mentally retarded’ category and stigmatised for the rest of their lives. Since there is very little support for families, mothers in particular are often forced to quit their jobs to take care of their Autistic children full-time. So are the mothers at FPCA are doing for their children.

According to Autism Speaks, a science and advocacy organisation in the US, around 67 million people worldwide fall under the Autism Spectrum (ASD). There is no data on Nepal, but ACN estimates there are anywhere between 1,00,000 to 3,00,000 Autistic children and adults in Nepal. Although the country is a member of the South Asian Autism Network, it has yet to fulfil its obligations. Nepal should look to provide opportunities and services tailored to Autistic children so they can become fully productive members of society. Introducing mandatory Autism screening for children aged 18-24 months like in the US, is the first step in helping families and health care providers. A comprehensive health and education policy that calls for special schools and outlines ways to help integrate and support children with developmental disorders into mainstream schools and community should follow next.

Friends of Parents
of Children with Autism

Swoyambhu Kathmandu, Nepal
(+977) (1) 403 8016
(+977) 9860 291 853 / 9849 989 475