For Anita Bedekar (name changed), a social analyst based in Mumbai, seeing her brother act out every other day wasn't a comfortable setting to grow up in. She recalls, "I would avoid calling my friends for night overs as I was ashamed of my brother." She feels that she was singled out in her friend's circle anyway, and bringing her friends home would further drive them away. "He would shout, scream, flail around, and my parents would need to restrain him at times. Looking back, I feel a lot of guilt about how I treated him or thought of him," she confesses.
Bedekar's story is one amongst many of those whose siblings or children are diagnosed with autism. Unfortunately, many Indian families continue to feel shame, stigma, and embarrassment when they come to know that their child has autism. And while the media has effectively glorified the disorder through the portrayal of Shaun Murphy in The Good Doctor, the reality is very different. Society continues to single out autistic children, adults and families continue to reject them. Experts say the gap in awareness might be the primary cause for this.
The gaping gap in awareness
Prathibha Karanth. PhD, Founder-Director, The Com DEALL Trust, an early intervention program for children with developmental language disorders based in Bengaluru, believes that awareness of autism has increased over the last decade. This isn't enough, though. "Awareness about the need for early identification, assessment and intervention have to increase even among relevant professionals and the public at large, because early identification followed by early intervention, provides the best prognosis."
Misinformation happens to be another problem; families often do not have access to correct information and cannot take steps early on to manage the symptoms appropriately. Madhavi Adimulam, the founder and director of ASAP - Autism Society of Andhra Pradesh and Telangana, says that despite the immense increase in the use and reach of technology, there is still a lot of misinformation regarding autism. "In general, people may have heard the word autism or an 'autistic child' but the true acceptance, understanding and awareness of the disorder and about the children/adult having autism, still has a very long way to go."
Swati Narayan, M.A., BCBA, the clinical director of the WeCAN Resource Centre for Autism, agrees with Adimulam. According to her, there are gaps in understanding the broadness of the spectrum and that autism does not necessarily follow the textbook definition of lack of eye contact and lack of speech. She says that many autistic children who come to the centre have language abilities and eye contact. "We have seen an increase in the number of parents who proactively approach WeCAN with a suspicion that all may not be typical or well with the child's development," she reveals.
The problem with acceptance
While there are gaps in awareness and information, there are hindrances that most autistic societies and organisations face when it comes to sharing knowledge and information. And the biggest concern amongst all happens to be acceptance. As Adimulam puts it, denial and rejection happen to be the most common hindrances they face every day at ASAP. She describes the thought process of the parents when they find out that their child is diagnosed with autism. "The initial reaction of the parents is 'How can my child have Autism?' or 'My child cannot have Autism'. Then comes 'Why did my child have Autism?'. Only then starts the series of visiting other centres or doctors for a second opinion." The dangers of this, Adimulam explains, are that a lot of the precious time of the child's crucial developmental years is wasted because parents deny and reject the possibility that their child can have autism.
Narayan shares more perspective on this front by saying that mindsets and cultural norms are barriers to accepting differences. "The need to adhere to what is seen as 'normal' and not accept any deviation leads to acceptance of the disorder becoming a difficult process for parents". The WeCAN Resource Centre for Autism released an international podcast--Autism Everyday-- available free of cost on Apple, Spotify, and Google to bridge this gap. The 65 episodes of the podcast detail the disorder, and the content is specifically geared toward helping families understand and deal with the diagnosis. The centre has also published a book titled A World of Difference: The Ultimate Autism Handbook for Mindful Parenting that considers Indian culture and the best research from the west to act as a guide for parents of children with ASD.
Steps parents can take
Karanth believes that parents of children diagnosed with autism need to start accepting the diagnosis and work towards empowering themselves and their child by exploring best practices and ensuring that their child receives it in time, even at the cost of temporary personal/professional setbacks. She says that autism is a condition that is still relatively poorly understood, and there are no magical quick cures. "As documented scientifically, as of date, comprehensive and intensive early intervention of good quality is what is documented to provide the best long-term impact; that can make a substantial difference to the child's future," she says.
Adimulam also stresses the importance of early intervention by saying that every day during the early years of a child's development is crucial. "As soon as the parents know about their child's diagnosis, they should start the required therapy," she emphasises. She adds that monitoring children's developmental milestones, spotting the symptoms, and immediate diagnosis and intervention are the need of the hour.
Narayan provides a broader perspective by saying that recognising autism in women and the presentation of the broader autism phenotype in adults, and understanding how autism can impact a child or an individual and how differently it can manifest, person to person, is necessary. "There is a need for increased sensitivity amongst families and educators about the condition and its implications. The individual can face a lot of challenges, many hidden, and we need to be compassionate and understanding of that," she concludes.