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Seventeen years on, the movement has evolved beyond merely raising awareness to actively promoting acceptance and appreciation of people with autism and their contributions to society.
Nagaland, though a little behind, has embraced the importance of raising awareness openly, evident by the increasing number of institutions, healthcare centres and autism advocates, while parents are gradually becoming more proactive by seeking medical assistance and professional therapies for their children.
The Department of Developmental Pediatrics (DDP) at the Christian Institute of Health Sciences and Research (CIHSR) in Chümoukedima, established in July 2014, stands as the first in the state to offer diagnostic evaluations for intellectual and developmental disabilities (IDDs), including Autism Spectrum Disorder (ASD).
Soon after the introduction of the DDP, Dr. Y Simpson, head of the department, felt the need to start an institute and opened the Precious Gems School in 2016, with an aim of educating and training parents of children with IDDs, so that they, in turn, can effectively educate and support their children at home.
“A multidisciplinary team approach is being followed including trained special teachers, clinical psychologists, speech therapists, occupational therapists, physiotherapists and paediatricians,” he said.
Accessibility and awareness challenges
According to Dr. Simpson, approximately 160 families have benefited from parents’ training, and around 2400 families have received assistance through diagnostic evaluations and counselling. However, access to the facility is limited due to various issues, including intake capacity, shortage of qualified specialists, geographical distance, inadequate transportation facilities, accommodation challenges and financial constraints.
During an interaction with Eastern Mirror, he noted that awareness about autism was almost nonexistent in Nagaland till a decade ago. Parents and family members of children with autism were unable to come out in the open due to misconceptions including autism being perceived as a ‘punishment or curse’ from God.
Emphasising that creating awareness is the need of the hour to help families of children with ASD in the state, he stressed the need for District Disability Rehabilitation Centres (DDRCs) in all districts with appropriate professionals for accurate diagnosis and intervention programmes.
Another reason for the lack of awareness, he said, is the non-availability of properly trained and experienced professionals in Nagaland.
Dr. Simpson was of the opinion that though the state has started strengthening rehabilitation services through the government hospitals and health centres including the DDRCs, disability and rehabilitation services and programmes are inadequate in terms of quality, coverage and range of services.
The role of parents and caretakers, he said, “is to make the government know about their pressing needs towards the management of their children with ASD rather than shying away and hiding the facts from the public”.
“Acceptance is often one of the biggest barriers for finding and developing a strong support system to have a more inclusive world,” he noted.
Role of schools and intervention programmes
Dr. Simpson suggested making schools more inclusive for children with autism by implementing appropriate intervention programmes managed by qualified specialists. He proposed appointing special teachers as shadow teachers to assist regular teachers in creating inclusive environments in schools.
Nohosanu Viswentso Kiba, an audiologist and speech-language pathologist at Eden Medical Centre, pointed out the effectiveness of organising seminars, workshops and collaborative events with schools and healthcare professionals as key methods for raising awareness among parents.
She said that early diagnosis and intervention can lead to substantial progress in communication, social skills and behaviour management, enabling individuals with autism to reach their potential and lead fulfilling lives.
Similarly, clinical psychologist Yangerinla C Sangtam, who runs Milestones, a centre for child development located at Eralibill village, said the facility focuses on all areas of neuro-developmental disorders.
“We cater to children diagnosed with autism spectrum disorder (ASD), attention deficit hyperactivity disorder, specific learning disorder, global developmental delay and intellectual disability,” she informed.
According to Yangerinla, social media can be a good platform to spread awareness, while acknowledging that churches have played a major role over the years in spreading awareness among the community.
She also suggested that parents of children with ASD form an association so that they can come together and work towards their children's future.
Dr. Apong Longchar, a child specialist at Nikos Hospital and Research Centre, said that parents and care-givers should be aware about early recognition and diagnosis as proper training can greatly help the child’s development.
He noted that symptoms of autism typically manifest before the age of three. However, in some cases, these symptoms may become apparent only gradually over time, especially as social demands surpass the limited capacity of the autistic child.
The doctor said that ASD is a biologically based neuro-developmental disorder, characterised by core deficits in two crucial areas of development -- social communication/interaction and restrictive, repetitive behaviour patterns.
To bring about a positive change among children with ASD, he said parents and caregivers should be aware of this condition and recognise early ‘red flag’ signs in order to bring the children to a professional health care provider for diagnosis and treatment.
• Poor response to name call by one year
• No meaningful words by 18 months of age
• Does not play with toys appropriately
• Fixed pattern of interest/activities
• Decreased interaction with peers/friends
• Has odd movements patterns and/or repetitive behaviours like hand flapping
• Demonstrates echolalia (repeat words)
• Is hyperactive
• Toe walking
What professionals have to say about some questions about ASD
Is prevalence of autism increasing?
Dr. Apong Longchar: Yes, the prevalence of autism has increased significantly and in India, the 2021 statistics showed that 1 in 64 children are affected by autism. Boys are affected more than girls in the ratio of 3:1.
But this increase in prevalence may be more due to increases awareness and diagnosis, better access to healthcare and broadening of diagnostic criteria.
Should screen time be cut down?
Nohosanu Viswentso Kiba: Excessive screen time can negatively impact children's physical health, mental well-being and cognitive development. It can contribute to sedentary lifestyles, sleep disturbances, decreased attention spans and social isolation. Encouraging outdoor play, hands-on activities, reading and interactive family time can promote healthier habits and facilitate holistic development.
Advice to parents: seek professional help
Yangerinla C Sangtam: First and foremost, do not delay the process. The minute you identify it and diagnosis is done, seek professional help.
A successful therapy calls for active involvement of the child, parent and the therapist. Parents and caregivers should be involved in the process equally along with the professionals. Advocate for your child. Seek support whenever and where ever possible. Do not hesitate to speak up, ask questions and assertively communicate your concerns.
What can the government do to spread awareness?
Dr. Y Simpson suggests that the state government should prioritize the development of manpower through special teacher training programs and the establishment of diagnostic units in all districts. This will enable the identification and assessment of children with disabilities, including Autism Spectrum Disorder (ASD). Additionally, conducting awareness programs in remote and rural areas by diagnostic teams can contribute to spreading awareness about ASD and other disabilities. It is crucial to sensitize Anganwadi workers in identifying special children within the community. The implementation of these initiatives should be led by the district and state level Social Welfare departments, along with the Office of the Disability Commissioner.