By Thirunavukarasu Kumanan –
Autism a lifelong neurodevelopmental disorder which is increasingly recognized throughout the world and Sri Lanka is not an exception. Services to the affected and their families are at preliminary level in most of the developing countries, while health, education and social services related to autism have achieved remarkable heights in the developed nations. In this context, Sri Lankan children with neurodevelopmental disorders are primarily cared at home rather than in institutions. If we consider children with autism, naturally they would have varying degree of language problems, restricted interests, repetitive behaviors, poor social interactions and learning difficulties. These impose a greater burden on parents in taking care of these children, and not surprisingly, burnout and frustration among parents are extremely common in the families with special children.
It is a well-known fact that families with autism children are leading a life with a delicate, fine balance. Children with autism usually have restricted interests and rigid daily routines; and non-access to those interests and breaking their routines would often end up with tantrums and melt downs, which disturbs the family dynamics and affects all the members of such families.
In this background, a global crisis like COVID-19 pandemic would definitely impose a greater challenge to the families with autism children. The pandemic crisis affects and sometimes becomes a threat to the family dynamics. The challenges of responding to a pandemic would have both beneficial and deleterious effects on the wellbeing of children with autism and their families. Let me explain some of these by examples.
Locking down a family with a special child would prevent the child attending his/her daily routines outside home environment including attending special education classes, participating in recreational activities and enjoying their favorite entertainment. In a lock down situation, the special need child has to find their own routines and explore alternative ways of recreation which may not be the same as it happens with a normal child. These alternatives and newer inventions may or may not turn out to be healthy behaviors, mentally or physically. For example, listening or watching YouTube for a limited time could be considered as okay for these children, but if it prolongs for an extended period at the expenses of their expected home routines, then it becomes unhealthy. Similarly children with autism, since they have nothing else to do, might engage in maladaptive behavior patterns like spinning a wheel or watching a shadow, and may de-learn all the behavioral training they received at the special education classes and home.
In addition, many parents would agree that these children always prefer selective food items, and unfortunately they are often junk. They tend to eat more biscuits and cakes of selected brands, and prefer to have food made up of wheat flour while they are at home. As a result, consuming energy rich food and the lack of opportunities for outside physical activities both would favor the onset of new health problems like weight gain and constipation in these children. In addition, since they are very particular towards their preferred brands and food items, parents often face difficulties in finding those food items that otherwise cannot be prepared at home. Non availability of such wanted food items ends up in developing anger and frustration among the children.
Parents of a special child should always attend the needs of the child irrespective of the outside normalcy or abnormality. Almost all their days and nights, they are not in a position to entertain themselves by watching a film, listening to some music or reading a story book as parents of a normal child do during their fee time, say for example the lockdown period. In fact, in reality, most parents with special need children feel relaxed at their working environment rather than at home. Apart from the affected child, when parents have other normal children, it may create an even worse situation as the parents have the moral responsibility to find time and look after the needs of other children.
Moreover, parents of special children are really worried about the direct impact of this pandemic virus disease on the family. In an unfortunate circumstance, if one of the parent has contacted the virus disease, that parent should undergo quarantine or self-isolation for more than two weeks. The impact of this is huge in the family and it is almost impractical to adhere to the regulations advised by health staff after becoming positive. The situation would be desperate if the special need child gets infected. A child with autism may not tolerate a mask, isolation on a new environment, or an unfamiliar health staff. They would not communicate their bodily symptoms, physical needs and emotional requirements. Admitting these children to an inward facility in the absence of a parent is virtually impossible. It is neither practical nor possible to ask the special need child to self-isolate or stay alone. In this reality, it is an utmost importance that every special parent should be vigilant enough to safeguard themselves and their nuclear families. The health care providers both in the curative and preventive sectors, should bear these special situations in mind when there is a possibility of a community spread, and provide services accordingly to such families in Sri Lanka.
On the other side, the pandemic and lock down has definitely created some positive effects on the families with special children. The lock down has provided an opportunity to take a break from the routines and to stay with the ‘whole’ family for many days. This ‘staying together’ increases the connectedness and offers a chance to conceptualize and realize how their home environment could be improved in future. Especially when the family members are together, there is chance for role reversals, as some of the usual responsibility of one family member could be replaced by another one. This is very true in regards to siblings of autism kids. Those siblings can have more time and a better chance to understand the behaviours of their special brother or sister.
The lock down also provides ample opportunity to learn, practice and review a number of behavioral approaches. For example, Applied Behavioral Analysis (ABA) is the cornerstone of a number of therapeutic options for Autism. Most of the ABA therapists recommend that a 6 hour, one to one interaction would improve the behaviours and skills in children with autism. The lockdown scenario would provide plenty of opportunities for parents to work with their autism child after allowing the child to settle on a new routine/schedule for few days. They can improve the joint attention, social and life skills, and more importantly, the abilities of adjusting to a change or new environment.
In conclusion, this global crisis of COVID-19 has a greater impact on families with special need children, and the health care providers should take this into account when designing strategies to counteract this global threat>
*Dr. T. Kumanan, A consultant physician and a parent of an autistic child – Jaffna & Senior Lecture Department of Medicine, University of Jaffna.