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Autism and Covid-19
Rukhsana Shah
THIS year, we are celebrating World Autism Awareness Day (April 2) during the Covid-19 pandemic which has changed our views on existentialism, social interaction and the planet’s future. On a less cosmic scale, economic recession, business closures, discontinuation of academic activities, restricted access to health services, curbs on social gatherings, and enforced isolation have drastically transformed our responses to everyday challenges.
For persons with disabilities (PWD), autism, and related neurodevelopmental disorders, ground realities have changed much more. Access to basic education, care and employment were already limited for them, while the social stigma that is still prevalent may lead to more discrimination during the pandemic.
While the closure of special schools with their therapies, exercises, outdoor activities and early intervention programmes has distressed children with autism, exclusion from appropriate spaces and structured environments have also increased their insecurity with resultant disruptive behaviours, whether at home or in residential institutions. Those with co-morbidities such as epilepsy, bipolar, hyperactivity and other disorders are particularly vulnerable because many parents may no longer be able to afford their regular medication, having lost their jobs.
Social networks are important for all children and adults with disabilities. These may be in the form of physical and academic help in schools, therapy sessions, playgroups for social learning or community support activities. These are no longer available due to frequent lockdowns that have disrupted routines. Isolation can enhance anxiety and depression even in atypical individuals, and the burden of explaining the new post-pandemic social realities to persons with autism is falling on parents and caregivers, who themselves need support.
Specific disability support policies must be developed.
The absence of appropriate social and legal frameworks to protect PWD has never been so starkly exposed. For example, the parents of a child with autism died last year in India from Covid-19. There were no papers on guardianship. The younger sister of the mother had to go to court to establish her relationship with the child and undergo a traumatising experience to obtain legal status as guardian-heir to support the child financially. Medical records, individual educational plans and social safety nets are not in place to take care of an orphaned child with special needs in developing countries.
The UN message for this year’s theme on autism is that Covid-19 has exposed “glaring inequalities around the world, especially when it comes to income and wealth distribution….” While inequalities have been in place since centuries between rich and poor countries, today it is the digital divide that is making things worse in developing countries where access to virtual platforms is limited due to lack of literacy, awareness and internet usage.
Another UN concern is that of reduced employment prospects for people with autism as “some neurodivergent employees will be particularly exposed to the deep downturn in the labour market”. In Pakistan, PWD have a miniscule quota for jobs which is much below their actual percentage of the population. As for persons with autism, employers are not aware of their skills and potential and so are not able to tap their talents as is being done elsewhere. With restricted avenues for awareness campaigns and amid changing public priorities, advocacy organisations are not able to highlight these issues as before.
This pandemic may last for longer than was envisaged with mutations of the virus and new diseases. So far, humanity has responded positively: personal safety and hygiene protocols have been given precedence on economic growth, education and social intercourse. Home education has emerged as a possible alternative for some parents.
According to a study conducted in the Philippines, parents are teaching their children new social insights and behaviours related to the pandemic along with hygiene regimens, physical exercise and meditation; they are imparting life-skills like cooking rice, cleaning and washing dishes to their children along with behaviour management and structured learning. They are looking beyond their immediate fears and redesigning solutions, communicating more with each other and benefiting from free online trainings being provided by some organisations.
So far governments have been too bogged down to respond to the needs of PWD and their families. But specific disability support policies must be developed to address their special needs during the pandemic. Education and health delivery systems need to be expanded and deepened along with empowerment of Lady Health Workers. Digital limitations notwithstanding, helplines must be set up to provide integrated services including medical treatment to PWD so that they do not fall through the cracks during these stressful times.
The writer is a former federal secretary.
Published in Dawn, April 1st, 2021
https://www.dawn.com/news/1615784/autism-and-covid-19