August 12th celebrates International Youth Day 2019. According to the United Nations, the theme of the International Youth Day 2019 is “Transforming education” and highlights efforts to make education more relevant, equitable and inclusive for all youth, including efforts by young people themselves.
Rooted in Goal 4 of the 2030 Agenda for Sustainable Development to “ensure inclusive and equitable quality education and promote lifelong learning opportunities for all,” International Youth Day 2019 examines how governments, young people and youth-led and youth-focused organisations, as well as other stakeholders, are transforming education and how these efforts are contributing to the achievement of the 2030 Agenda for Sustainable Development.
In Pakistan, a young woman named Masooma is trying to make a difference and this is her story. The autism spectrum disorder or ASD, commonly known as autism, is a recognised disability in the Western world, but it is yet to be acknowledged in Pakistan. Sadly, only four categories of diability are considered in Pakistan. These include visual impairment, hearing impairment, physical disability and mental retardation, according to Masooma, the chairperson of an autism and learning disabilities organisation.
Masooma says, “ASD is a kind of neuro-developmental disorder and a lifelong condition. It is a type of condition in which neuro transmitters are not fully developed when the child is in its mother’s womb. As a result, the child cannot correctly process information of any stimulus with his/her senses. These kids cannot learn automatically and in the same way that normal children learn. We create a distraction free environment for these kids to make them learn. Even the simplest task is divided into a chain, presenting one stimulus at one time, using a picture exchange communication system, so they can learn it.”
It has been a long and tough journey for Masooma, who is the first woman from the conservative north-western province of Khyber Pukhtunkhwa to take a step towards awareness and setup the first autism centre of the province. It is a non-profit organisation and she says that there is very little help from the government. She says, “I provide around $4000 worth free-of-cost services to needy ASD children. But I still run on donations to help more and more ASD children. There is lack of awareness and expertise about autism at the local institutional level.”
To spread awareness she participates in media talk shows and goes to mainstream schools voluntarily to educate and train teachers about learning disabilities, its effects and how to intervene and help.
At her centre she provides services to ASD children on the basis of their financial situation. For the kids whose parents can afford it, she provides therapists, while for more needy children she gives assessments and planners and trains their mothers to provide help to their child at home. “Because of the involvement of the mothers the nature of services are inclusive at my centre,” she says.
There is a stigma attached to the word disability, predominantly mental, within Pakistan. Whether it is culturally or socially constructed is debatable but it certainly prevails within the most modern realm of elite society as well as within the rural demographics of Pakistan. “Everyone should play a part in changing attitudes towards people with autism”, Masooma says.
Autism develops as a result of a combination of genetic and non-genetic or environmental influences. The number of children with autism in Pakistan is not known but considering the recent census and figures quoted by the United States of one in 59 children a rough calculation would suggest that there are 1.7 million children with the condition. Taking the country’s birth rate into account, thousands are added to this figure every year.
“In the beginning, my autism centre had the capacity to cater to eight ASD children, for regular sessions, but now I have extended the services and am providing services to twenty-five ASD children. I have two speech therapists, two physiotherapists and eight behaviour therapists in my team, while there are four mothers who volunteer. I have split the services in two shifts. Each shift is comprised of three hours, one hour behaviour session, thirty minutes speech session, thirty minutes physiotherapy session, circle time and a self-help skills thirty-minute session.” Masooma says.
Most of the equipment at her centre was donated. She says her team can provide services to twenty-five ASD children. But still there is a pressure from the parents of ASD children who cannot be admitted due to limited human and physical resources, which do not allow her to extend the services to more children.
Masooma looks towards the government to help expand her centre, so that she can help more and more children.