World Autism Awareness Day-Light It Up Blue
Ksh Rameshori Devi (M.ASLP)
It seems that for success in science or art, a dash of autism is essential—-Hans Asperger
April 2, is observed as “World Autism Awareness Day”, and the whole April months is celebrated as “Autism Awareness Month” and are joined by the international community, hundreds of thousands of landmarks, buildings, homes and communities around the world come together, to Light It Up Blue in recognition of people with autism and those who love and support them.
American Speech and Hearing Association (ASHA) define Autism Spectrum Disorder (ASD) as “a neurodevelopment disorder characterized by deficits in social communication and social interaction and the presence of restricted, repetitive behaviors”. Although autism can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first two years of life. Autism is known as a “spectrum” disorder because there is wide variation in the type and severity of symptoms people experience. ASD occurs in all ethnic, racial, and economic groups. Although ASD can be a lifelong disorder, treatments and services can improve a person’s symptoms and ability to function.
According to WHO, 1 in every 160 child worldwide is affected by Autism Spectrum Disorder (ASD) and in India roughly 23 of every 10,000 children have autism. It is four times more commonly diagnosed in boys than in girls. Autism can only be detected through behavioural tests. There is no medical diagnosis available since the disorder is not based on any particular biological marker. However, “the behaviour itself may change due to intervention or the lack of it, making the condition mild or worse” Dr Prathibha Karanth, founder of Communication Deall observed.
The Fifth Edition of Diagnostic and Statistical Manual of Mental Disorders (DSM-5) (APA- 2013) introduced 3 levels of severity:
Level 1: Requiring support
Level 2: Requiring substantial support
Level 3: Requiring very substantial support
The levels of severity were assigned based on Social Communication and Repetitive Behaviour.
Social Communication -
A1. Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction
A2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication
A3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behaviour to suit different social contexts
B1. Stereotyped or repetitive speech, motor movements, or use of objects, highly restricted interest
B2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change.
B3. Highly restricted, fixated interests those that are abnormal in intensity or focus
B4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
Autism and society:
Mental and neurological conditions in India are perceived as a taboo. The major population resides in rural areas, where the knowledge about autism is very limited. It could be easily mistaken with other conditions. People with autism are physically indistinguishable from the general populace. As a result, they are largely viewed as misbehaving, disruptive or defiant. Society does not empathise with the challenges that persons with autism face, the way it does with other visible disabilities.
“Even for parents of children that are not on the spectrum, there is no such thing as a normal child,” quote by Autism mother; the society should also have empathy toward the parent who is undergoing tremendous stress. Parenting an autistic child requires a lot of patience and unconditional love. Most imperative step is to realise and accept that their child is different.
Every year United Nation celebrates World Autism awareness day with a theme and 2021 theme is “Inclusive in workplace”. Persons with autism face widespread discrimination and are often barred from participating in civic and recreational activities. Schools are by and large not inclined to admit them. Employment is closed to them. The European Agency for special need and inclusive education (2018) states that inclusive education and social participation in school are the most important contributing factors for people with disabilities’ future social participation in society. India’s National Education Policy 2020 (NEP) asserts that children with disabilities will have opportunities for equal participation across the educational system. A major victory is the recognition of the 2016 Rights of Persons with Disabilities Act (RPWD) and its provisions for inclusive education, defined as a system of education where students with and without disabilities learn together. Autism spectrum disorder is not degenerative and it not a condition that gradually deteriorates one’s ability to function as untreated diseases does. Individual with ASD can continuously improve. They are most likely to improve with specialized, individualized services and opportunities for supported inclusion. The poet and writer Tito Mukhopadhyay was diagnosed with a severe, nonverbal autism diagnosed back in 1990s. His mother, taught him to communicate through writing. He writes: "One day I dream that we can grow in a matured society where nobody would be 'normal or abnormal' but just human beings, accepting any other human being –ready to grow together."
This April let light up kindness, and create inclusive environment for people with Autism and increase understanding and acceptance of this individual with ASD.
The writer is Assistant Professor in speech and hearing (ENT, Dept) RIMS