Parenting is not always easy and parenting a child with autism spectrum disorder (ASD) is even harder. There are many obstacles that parents of autistic children have to face along with innumerable adjustments to be made physically, mentally and emotionally to help their child and themselves. To understand what it is like to be a parent of a child with autism, family advisors from Sethu Child Development Centre, Drina Fernandes and Rebecca Manari were interviewed on The Navhind Times, Talk from the Heart show that aired on the Goa365 channel on June 4. Both Fernandes and Manari are not just family advisors but also parents of children with autism and spoke from the heart about their experiences and gave suggestions to other parent based on these experiences.
ASD is a developmental disorder that involves impairments to social and communication abilities, restricted interests or repetitive behaviors, and challenges with sensory processing. Many parents who have a child on the autism spectrum and are not aware of it, are initially confused by their child’s behaviour and experience profound struggles as they do not know how to best address their child’s needs. “Inadequate knowledge, psychological distress and stigma, lack of support, and barriers to services are some of the main challenges that parents have to face,” said Manari.
Early signs of autism include avoiding eye contact, not showing interest in other children or parents, talking less than other children, and feeling distressed by small changes to the daily routine. The symptoms vary from child to child, ranging in type and severity and the condition is able to be diagnosed by about two years of age. “When my son was around a year old, I noticed he did not respond to his name. Also until then he had not spoken a word,” shared Fernandes, “I waited for another six months but when he still hadn’t spoken, I realised there was something wrong.“
Screening is the first step in getting a clear diagnosis and then moving ahead with the treatment. Autism can only be detected through behavioural tests. There is no medical diagnosis available since the disorder is not based on any particular biological marker. Confirmation about the diagnosis however is not easy; neither for the parent nor the family and their reactions too differ. From shock to denial, despair and sadness and sometimes even loneliness, the range of emotions is vast and varied. “Even though I was expecting a diagnosis of autism, I still felt a degree of sadness,” said Manari. Many doubts about her son’s health, relationships and education plagued her and she then began her research into, “Everything autistic,” she said. “I wanted to know everything I could about my child’s condition and be prepared in the best way possible.“
Having a child with autism is extremely challenging and both mothers shared some of their experiences, both good and bad. “It is important to empower yourself with positive thoughts and actions because not everybody in your family or friends may understand the situation hence you need to be strong,” said Fernandes.
Many concerns regarding the condition were expressed and discussed.