Most of us are aware of Speech impediment caused in young children owing to a disorder known as Autism Spectrum Disorder (ASD). Swarit Gopalan, the 13 year old autistic author of the book ‘Questioning Ableism’ says he expects action; not merely our awareness. His 32 page tiny booklet is undeniably thought provoking.
Swarit uses typing to communicate. He lives with his parents in Florida, U.S.A. Admitting that he is a nonspeaker, he seeks from us all a better understanding of nonspeakers like him all over the world. He does not want to be told to do that which he cannot or will not be able to do. He hates sympathy and pity. He looks forward to support of society.
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Autism is a complex developmental condition that makes social communication a big challenge. According to the Center for Disease Control and Prevention (CDCP), one among 36 children in the world has been identified with Autism Spectrum Disorder (ASD). Parents, caretakers or paediatricians notice early signs of this condition before a child reaches one year of age. In some cases, the problems related to autism may be mild and not apparent until the child starts attending school.
Children affected by Autism Disorder dislike sharing their interests with others and also avoid eye-contact. Sometimes there is a lack of proficiency in using non-verbal gestures. The speech is usually stilted. They are unable to interpret clearly abstract ideas. Making friends too becomes difficult. Generally restricted interests and repetitive behaviour are noticed in such children. Besides, an aversion to loud noises is also found. It is believed that an early diagnosis of Autism can greatly improve a child’s functioning. However, the first step is seeking an evaluation. The booklet of Swarit makes readers realise the dire need of action, rather than awareness.
Swarit Gopalan is quite right when he asks us why autistic geniuses are taken for granted in stories and real non speakers like him are looked at suspiciously. He says men like him may not be super heroes but they too deserve a chance to be treated as geniuses. He expects us to see men like him, as what they really are.
Swarit admits that inability to speak is the core of his disability. He understands language but finds it difficult to let out those words. He asks us, why should men like him be judged by the simple words that they are not able to speak. He expects us all to accept alternative forms of communication. Speech alone does not define intelligence, according to Swarit. Diverse ways of communication must also be recognised and respected. He means to say that we miss their inner voices.
Certain traits and abilities are out of the reach of autistics but people are wrong in defining leadership and finding autistic voices missing in it. The author says leadership should reflect the lived experience of the autistics. He stresses that he does not lack emotions. His struggle is only with uncoordinated expressions. He too has emotional needs like all others, but they are just being expressed in a different manner. He emphasises the fact that autistics do not lack social connections. All that we should do is to create the right opportunities for them to connect. Emotion can certainly be understood even without getting spoken, says Swarit Gopalan.
Swarit adds that eye-contact causes distress to some autistics like him. Hence, it should not be enforced as a social norm. Eye contact often seems to be a performance rather than a way for true connection. Outdated norms must be challenged, according to Swarit Gopalan. He says, their presence should be felt rather than forced. How can they be expected to win the battle of life, asks Swarit, when they are not even allowed on the battle field? He is upset over the unpalatable truth that the worth of men like him are still being measured by society, using outdated standards. He believes success must be redefined. Their efforts should not go unseen. Men like him deserve to be treated with dignity and respect.
Autistics like him want their presence to matter. They should not feel like outsiders in a social setting. They must be a part of any group in social settings. Merely being tolerated is sheer humiliation. Including people is more important than just inviting them to an event. Justice for disabled people should not be like a staircase thought and a belated one. Swarit says, men like him infact wish to avoid self-absorption and withdrawal.
The author says that autistics like him do have their strength and they need only certain support. They must be treated like the rest of society. Just because he does not nod vigorously one should not presume that he has not understood. He has a different kind of body language but that does not mean that he cannot understand us. Communication is not only about speed but also respect and understanding. Why do people expect others to respond in the way that they expect, asks Swarit Gopalan.
Autistics like him want their presence to matter. They should not feel like outsiders in a social setting. They must be a part of any group in social settings. Merely being tolerated is sheer humiliation. Including people is more important than just inviting them to an event. Justice for disabled people should not be like a staircase thought and a belated one. Swarit says, men like him infact wish to avoid self-absorption and withdrawal. The emotional and mental health of the non-speakers like him should not be affected by faulty judgments.
Swarit says men like him should not be isolated from the things they actually enjoy. They should not be considered a stumbling block for no fault of theirs. Society should make enough room and help them have an access to every pleasure. Interdependence is essential. The struggles of autistics must be truly understood. They deserve relationships built on true understanding. Swarit Gopalan has coined an excellent word “ABLEISM” for the title that denotes ability affected by the disorder.
Swarit Gopalan has written in a lucid, clear style without even an iota of obscurity. As a writer he is sure to reach glorious heights in life. It is said, life is sweet because it is short. The chapters in this booklet are not LONG but undeniably BIG.
