Nisha*, a 37-year-old communications manager from a tier 2 city in North India, was deeply concerned when her 2-year-old daughter showed partial speech and social regression. She visited three pediatricians who dismissed her concerns as ‘overthinking’. Her worst fears came true when a clinical psychologist diagnosed her daughter with borderline autism. Her daughter had been enrolled in a pre-primary school by then.
Nisha was in for another disappointment, this time from the school. “When the teachers observed my daughter’s poor social skills and initial lack of communication, they suggested that she repeat the class until she started communicating, despite her strong academic performance. Her therapist strongly opposed this idea, as children with high IQs can lose interest in academics if the material is not challenging enough. We had to persistently advocate with the teachers to allow her to continue progressing.”
The right school for ASD
As of 2023, there are more than 5 million individuals with Autism Spectrum Disorder (ASD) in India alone. ASD is a neurodevelopmental disorder affecting a person’s communication, learning, and behaviour. The term ‘spectrum’ indicates a wide variety of symptoms that persons with autism can experience. While it is difficult to identify a specific cause, several genetic or environmental factors could lead to ASD. The symptoms include avoiding eye contact, not responding to their name, intense reactions to specific tastes, smells, or sounds, and anxiety, among others. Depending on the severity of symptoms, children with ASD can be diagnosed with levels 1, 2, or 3, with those at level 3 requiring maximum support.
Parents of children with level 1 or 2 autism often face challenges in settling their child in regular schools. Often, teachers retain a child with ASD in a particular class just because the child doesn’t meet the required milestones or lacks a specific skill. This leaves parents with the option of finding inclusive or special schools, which is a bigger challenge.
Often, teachers retain a child with ASD in a particular class just because the child doesn’t meet the required milestones or lacks a specific skill. This leaves parents with the option of finding inclusive or special schools, which is a bigger challenge. | iStock/Getty Images
Nisha explains, “Many schools in the tier 2 city where we live lack the resources to support these children. There is very little awareness among teachers and few provisions for accommodations for neurodivergent students or those with sensory processing disorders. The rigorous curriculum most schools follow leaves little room for consideration in this regard.”
Swetha Sekar, a 43-year-old finance manager working in Chennai, faced a similar situation. Her son, Siddhanth was doing well until he suffered a viral infection at the age of 2.5 years, which led to ASD. Siddhanth was moved to a Montessori school just because the previous school didn’t allow him to continue despite his good academic performance. While the Montessori was more inclusive, the special educator mentioned that Siddhanth had to be held back in the upper kindergarten class. Siddhanth was shattered.
“He said that he didn’t want to go to school at all because every friend of his had moved from UKG to the higher grade, and he was being held back,” Swetha recalls. She then requested an expert educator to convince the school authorities not to retain Siddhanth. “They moved him to lower elementary, that is the first standard. And he’s been doing quite well. Now, he’s almost at par with neurotypical kids in communication”, Swetha adds.
Despite their experiences, both Swetha and Nisha agree that the schools should not be blamed for excluding children with ASD. In most cases, teachers lack awareness and hence perceive autism in extreme terms. Additionally, teachers tend to focus more on the neurotypical, attentive children than those needing more help. “In a class of 40 students, if one kid disrupts the atmosphere, the teacher will want to focus on the remaining 39 students, right? So this one kid needs more attention, which is not something many schools are equipped to do in India at least”, says Swetha.
The National Education Policy (NEP) 2020, under Equitable and Inclusive Education, emphasises the need to create an inclusive environment for all children, including those with learning or physical disabilities. “A school has to have a counsellor and a special educator, not just because the NEP says so, but because inclusion is necessary,” comments 38-year-old Sonam Paradkar, who has 13 years of experience as a hub-in-charge, head counsellor at Poddar International School, Aurangabad. She further adds that all schools must have special educators and counsellors and that it is a punishable offense to deny admission to a child because they have ASD. Sonam Paradkar is presently working as a domain consultant and master career counsellor at TCS iON, Mumbai.
The Right to Education (RTE) mandates children with disabilities to complete elementary education. “Autistic kids may need time to adjust to a new environment. For example, before a child with ASD starts a new school, allow her to visit the school once before classes start, let her see the classroom, and touch her bench. Once the classes resume, she can carry her favourite blanket or toy– anything that calms her anxiety. She can be excluded from the seating arrangement rotation. Some days can be tough, but everything you do in the class is worth it ”, suggests Sonam. She adds that a slight change in attitude and patience can set the stage for creating an inclusive space.
Some children with ASD may require the help of a shadow teacher in class. Shadow teachers are trained professionals who provide personalised support to a child with ASD in an educational setting. They eventually help the child integrate with the mainstream classrooms. However, some schools have strict rules where no outsiders, including shadow teachers, are permitted in classrooms. This causes problems in educating a child with ASD.
Thirty-eight-year-old C.K. Mano Ranjani explains, “Physically disabled children need a ramp. Children with visual impairments need a Braille script; similarly, hearing-impaired children require hearing aids. But children with autism require emotional support. The child may not follow what the teacher is teaching. That’s where individual support is needed, in the form of a shadow teacher.” Mano Ranjani is a parent of a 14-year-old son with ASD, and runs an active WhatsApp support group of nearly 2,000 parents of children with ASD.
She further mentions that some schools charge exorbitant fees if a child requires a shadow teacher. In some other cases, children with ASD are left to learn on their own, despite parents paying for a shadow teacher. When such students lose interest in learning, the schools ask the parents to find another school. “The worst is, they complain about the child and ask us (parents) to enroll the child in another school. This happens regularly. Parents cannot take any action against the school, and we don’t have any place for any grievance redressal on issues like these”, she says.
High achievement
Chithra Seshadri, 45-year-old a behaviour analyst who lives near Shoolagiri, Tamil Nadu, is the mother of an 18-year-old autistic son, and a founder of three different learning centres, including Sambhavam Austim Centre. She previously tried settling her son in three schools, including an alternative school. However, none of the schools provided the kind of support her son needed, and he was eventually home-schooled. Chithra recalls, “Teachers would ask me what the problem was. He was doing well academically. I said that my son solving the worksheet well is not important. What is he going to be as a person? What is he learning in terms of human interactions?”
Soon after her son was diagnosed with mild-to-moderate autism at 3.5 years, Chithra enrolled for a Parent-Child Training Programme (PCTP) and also got trained for Applied Behaviour Analysis (ABA). Today, as an 18-year-old, her son is pursuing A levels in the Cambridge syllabus, which is equivalent to Class 12. Chithra remarks, “He does very well academically. He manages his emails and assignments. I am his emotional regulation anchor. I help him mainly with managing emotions.”
Parents and experts believe that awareness and empathy are the key elements of inclusive spaces. Sonam explains, “Children with ASD are trainable if you train them in a particular manner. They can successfully perform almost all the day-to-day activities and some can even take up select occupations. It depends on how you see it (autism)– as a problem or a challenge.”
(* Child is not identified as per parent’s request.)
(The author is a science educator, communicator and facilitator.)
Published – November 11, 2024 05:43 pm IST
