I remember the time I was undergoing my training during my Masters’ degree and we used to visit various clinical establishments to gain knowledge and skills to facilitate training or therapy for people with psychological disorders. We met people of all age ranges, all orientations, all social classes. Of all the cases that we used to deal with, children would always make a significant impact on me. I met children with cerebral palsy, attention-deficit hyperactive disorder, intellectual disability, autism spectrum disorder, and more.
There was this child I had met during one of these trainings that I had attended. He was sitting in one corner of the room, had beautiful features, striking dark eyes, a soft voice and was busy on this keyboard that he had. Being somewhat of a singer myself, I thought it would give me common ground to spark a conversation with him and I went and sat next to him and said, ‘Hi!’ And he ignored me. Not deterred, I asked so which song are you playing? And again, no answer. This one-sided conversation went on for another 15-20 mins, when one of the resident educators there took pity on me and came to talk to me (I was a non-psychology student who had just entered Masters in Psychology, and clinical psychology no less). She explained to me the other symptoms that he presented with and that he had autism. Although he did not communicate with people, he used to play beautiful pieces of music; he would not show any affection to his educators there but would take their hand and lead them towards water to quench his thirst.
Autism, as it was known initially, was first described as ‘childhood schizophrenia’ in the 1950s and the prevalent belief around this time was that it resulted from ‘cold parenting’ and unemotional mothers. This time was also fraught with confusions related to the validity of the disorder. However, with considerable research in the years to follow, 1970s saw considerable advancement in comprehension of autism and its causes specifically implicating biological causes entrenched in brain development and genetics.
Autism was classified under pervasive developmental disorders as per the Diagnostic & Statistical Manual of Mental Disorders III (DSM-III). It was understood then that a child showing symptoms of autism would withdraw into his own world, show significant impairments in social interaction and communication, and would show restricted behavior, interests and activities that he performed. Termed as ‘pervasive’ because these issues would significantly impair the functioning of this individual throughout his life. And the boy that I met that was a textbook case of autism. One common generalization about these pervasive developmental disorders and autism specifically was that there was no effective treatment which could completely cure autism. As is the case with the discipline of psychology and all other psychological disorders, this created a rigid view.
This fixed view changed in 2013 with the American Psychiatric Association bringing forth the fifth edition of the DSM. Autism was removed from the pervasive developmental disorders, classified under neurodevelopmental disorders and renamed as autism spectrum disorder (ASD). This was done to address the fact that presentation of symptoms varied over a wide range depending on the severity of symptoms, developmental level as well as chronological age. Similarly, the current edition of World Health Organization’s International Classification of Diseases (ICD-10) lists autism under pervasive developmental disorders but has been updated autism spectrum disorder classified under neurodevelopmental disorders in the eleventh edition to be implemented in 2022.
ASD now is an umbrella term for disorders such as childhood and atypical autism, Asperger’s disorder which were initially listed separately. It is now diagnosed with the presence of persistent deficits in social communication and social interaction ranging from complete lack of speech, poor comprehension of speech, or echoed speech. Even where formal language skills such as grammar and vocabulary are intact, they do not engage in to-and-fro conversation. The diagnostic criteria also include restricted, repetitive patterns of behavior including repetitive motor movements, insistence on sameness, rigidly sticking to routines, strong attachment to unusual objects, apparent indifference to temperature changes, to name a few commonly observed symptoms among other symptoms.
Deterioration of social behaviors and/or use of language is often seen to occur increasingly in the first 2 years of life. Loss of skills beyond these symptoms or after the second birthday would point towards the need for extensive medical investigations. Most individuals have been seen to improve behaviorally as they move through adolescence. Of those diagnosed with autism spectrum disorder, a minority of them manage live and work independently in adulthood; those who do, present with better language skills and high intellectual abilities. Those with lower levels of impairment are better able to function independently and have been observed to go on to live fulfilled lives; however, they may have trouble organizing and coping with the demands of daily life and social interactions and may become prone to anxiety and depression. Continued rigidity and inability to accept the new also contributes to their inability to function independently.
With all the researches and advancements achieved, ASD can still not be cure. The condition can be maintained with the help of medication as well as psychosocial interventions. Timely interventions have been known to reduce symptom severity and improve the cognitive skills of the child while enhancing the capacity of the child to perform his daily activities. Applied behavior analysis and pivotal response treatment are behavioral methods which facilitate this process. Social skills interventions focus on emotional regulation, enhancing conversational skills and social interactions. Therapy also facilitates the process through which an individual learns to live as independently as possible.
For a parent with an autistic child, it can be very exhausting to manage all aspects of life as well as the child. However, support systems are in place which can ease this journey. Ensure that you, as a parent, find yourself a group of trusted practitioners (your doctor, clinical psychologists, therapists, social workers, educators), educate yourself about the disorder and talk to your doctor about new therapies. Equally important for the parents and family is to take time out for themselves to avoid burnout. International and National bodies are working towards the inclusion of the neurodivergent in the mainstream e.g. the SDG 8: decent work and economic growth aims to promote productive employment for all including people with disabilities. This World Autism Awareness Day let those of us belonging to the ‘normal population’ take a pledge to help those around us with Autism Spectrum Disorder and their families lead a happy life, maybe lend a helping hand here or there, let them know someone’s got their back and support them through this journey called life!