Over the recent years, there has been a perceptible increase in the enthusiasm and activities around World Autism Awareness Day, observed on April 2. This reflects growing awareness about the condition among the general masses and concern in the society for this vulnerable differently-abled section.
However, while autism care and support has made a marked improvement in the urban areas, the same cannot be said for the rural parts as most of the children with autism are under-served. There are multiple factors for this gap. Outreach for autism cases in rural areas are hindered by geographic barriers, lack of awareness, cultural perspectives, low socio-economic status and low educational attainment. Combined, they contribute to the children and individuals with autism being missed or mis-diagnosed in rural belts. Particularly, due to lack of knowledge and lack of right diagnosis in initial stages, many children with autism are victims of delayed screening and deprived of early intervention that could make a huge difference.
The prevalence of the complex developmental disabilities known as Autism Spectrum Disorder (ASD) is on a fast rise across the globe. This condition was first described by Leo Kanners in 1943 and later studied by many researchers. The symptoms appear in the first two years of life. It affects communication skills, social interactions, sensory integration, gross motor development and behaviour of the children partly or severely. This is also known as a Spectrum disorder because there is wide variation in the type and severity of symptoms people experience. Irrespective of urban or rural, people of all genders, races, ethnicities and economic background can be diagnosed with ASD.
Under these circumstances, parents of children with autism living in rural areas face unique challenges based on their location and social structure. It includes barriers to diagnosis and treatment due to scarcity of qualified specialists and professionals working for autism and, most importantly, distance between services providers and them. Further, the prevalence of social stigma associated with the disability in rural mindset compounded by inadequate knowledge of health workers and paramedical staff can also cause delay in identification of cases. This, to a great extent, restricts intervention and therapeutic services they deserve. Furthermore, due to lack of financial strength, parents of children suffering from ASD cannot afford professionals like psychologist, occupational therapist and speech therapist. They also cannot access intervention centres in the towns or cities by commuting everyday from their villages.
Autism care has undergone a sea change in the recent times. Hospitals and specialised clinics are coming up in many places, providing facilities for rehabilitation of autistic children and children with attention deficit hyperactive disorder (ADHD). However, parents from rural areas are deprived of such services due to financial constraints and instead, travel miles depending on the only over-burdened district headquarter hospital or a little-known SSEPD department-supported therapy centre for intervention.
Since there is no medicine to cure autism and ADHD, rehabilitative therapy is the only solution to improve their condition. As they have problems of perception, eye contact, social interaction, the sensory integration therapy or SIT can help autistic children to coordinate their activities by putting their various senses together involving the vestibular exercises and tactile activities. The earlier the intervention, the better it is and the activities have to be continued for years. Only then the symptoms of autism can be minimised.
To bridge the uneven gap, a feasible roadmap must be prepared for providing care to autistic children in rural areas. This year, the theme ‘Colour’ for the World Autism Awareness Day, 2024 is to honour and cherish the diverse spectrum of abilities and experiences in the autism community. Celebrating the colours of spectrum is to say we celebrate the whole person in entirety, to look beyond the stereotypes and misconceptions and to ensure that people with autism are welcomed and valued in every community. Let’s make it possible with our unwavering support.
(Writer is a social worker)
Biraja Routray
birajaroutray@gmail.com