BHUBANESWAR:Autism in children in Odisha is diagnosed as late as two years, thanks to lack of awareness, socio-cultural attitudes and unavailability of appropriate services which have hindered early recognition of signs and symptoms by patients.
Parents here notice something wrong with their children at least four to six months later than their counterparts in the US. While the child, consequently, is already one year old at the time of parent recognition, proper diagnosis and appropriate care seeking takes much longer till two years or more, a study conducted by Indian Institute of Public Health, Bhubaneswar has found.
The team of researchers comprising Dr Sanghamitra Pati, N Srinivas, Subhashisa Swain and Rakesh Ranjan Nanda interviewed around 76 parents having children suffering from autistic spectrum disorder (ASD) and found that the gap between suspecting some problem and taking steps for proper diagnosis was at least six months.
Most parents were not aware of ASD prior to diagnosis, which is a major cause of delay. Though they notice something wrong like neuro-developmental problems, motor abnormalities fairly early, they usually ignore them as slow development of their children. Speech or language delay is not considered a major problem because of cultural belief that it is a sign of intelligence and boys talk later than girls.
“The socio-cultural milieu also aids the contention that the child is slow in development and will become normal in due time. Although parents notice some abnormality, they tend to live in denial. This apart, fear and stigma related to approaching psychologists, psychiatrists or neurologists for their child’s problem also hold them back. Only after the symptoms became more pronounced and the child’s deficiencies in social circles like play schools were noticed, did majority of parents seek proper medical care,” Dr Pati said.
Autism is a major cause of childhood disability across the globe. Though there has been no proper study on incidence, estimates put the prevalence at one in 250 children in India. However, the real magnitude could be more due to under reporting and under diagnosis.
The study also found lack of proper services to be a major environment factor for delay. The parents had to consult multiple health professionals as pediatricians, child psychologist, speech therapist and neurologist for final diagnosis. Many even had to travel far to NIMHANS, Bangalore for diagnosis due to absence of facilities here.
There is a need for creating awareness and developing appropriate centre for treatment and care for ASD. Referral and counter referral mechanisms have to be developed to save delay in diagnosis and initiate prompt treatment, the researchers have emphasised.