The inner world of autism
(First published in Mint, 29 Oct 2012)
Two of the most well-known authors to describe their struggles with autism are Temple Grandin and Daniel Tammet. By portraying their life journeys, these individuals exhibit their grit and tenacity to carve niches for themselves and make a mark on the world. Grandin, besides being one of the most vocal and notable activists for the rights of autistics, has also designed a humane and unique livestock-handling machine. In her memoir, Thinking in Pictures, Grandin illustrates how she is a visual thinker but has a hard time comprehending words. In Born on a Blue Day, Tammet illustrates his behavioural oddities like counting the number of items of clothing he is wearing before leaving home and using an electronic scale to measure exactly 45g of porridge for breakfast. However, despite his difficulties, Tammet has impressive achievements to his credit like setting the European record for reciting the digits of Pi from memory to over 22,000 places. He also has a facility for learning foreign languages.
While these books are definitely inspiring, they are written from adult perspectives. Even when delineating their childhood difficulties, they do so from the prism of adult recall. As many autistics are non-verbal, especially when they are young, they are perennially misjudged, misread and misunderstood. Trapped by their autism, many are unable to communicate how they feel or why they behave in certain ways. What may appear as an oddity or eccentricity may be a perfectly rational response from an autistic point-of-view.
But two new books, by and about autistics, delve into the inner worlds of children and their families as they grapple with the day-to-day challenges that autism throws their way. As a result, parents, teachers, relatives and friends can gain a deeper insight into the seemingly disconnected oddities, like poor communication skills coupled with hypersensitivity to touch, or a lack of empathy combined with savant-like skills in computation or memory. As parents shuttle children to and from an array of therapies—speech, occupational and special education classes—they often have to devise their own coping mechanisms for having a bath, boarding a plane and attending a wedding as these activities can cause strain and strife for an autistic child and her family. Some parents rise to the challenge of raising a special child with a forthright acceptance and fortitude. However, many parents are stymied, as they feel they are unable to break through the wall of autism to get through to their child.
One of the recent books to shed light on autism from the lens of a 13-year-old is Naoki Higashida’s The Reason I Jump. In a moving introduction to the book, British author David Mitchell, whose son is autistic, writes about how frustrating it is for a parent to not understand his child. But thanks to Higashida’s book, Mitchell feels he has more insight into his son’s inner universe. Mitchell asks us to imagine a life where we are deprived not only of speech but also of the “editors” of our mind and senses. As a result, we are flooded by a confusing cascade of memories, thoughts, ideas and a cornucopia of visual and auditory sensations. According to
Mitchell, “this unedited, unfiltered and scary-as-all-hell reality is home” for autistics.
The very fact that Higashida managed to write a book is a commendable feat, given that he cannot communicate orally. But thanks to his own grit and the perseverance of his teacher, he learnt to spell words on an alphabet grid. His book is an eye-opener even for parents. When you know that your child wants and is trying to speak to you, even though his behaviour may exhibit contrary signals, then as Mitchell writes, “you can be ten times more patient, willing, understanding and communicative”.
Higashida explains eloquently for a 13-year-old why having a conversation is such a Herculean task. A reason he avoids making eye contact while listening to another person is because he needs to focus on the person’s voice with all his senses in order to figure out “what the heck it is you’re saying”. Contrary to a mistaken notion that people hold, Higashida clarifies, “Our feelings are the same as everyone else’s, but we can’t find a way to express them.”
In his book on identity and difference, Far From the Tree, author Andrew Solomon interviews parents of autistic children. His interactions attest to the heterogeneity of the condition and describe the frustrations and bewilderment of autistics and their families. For example, Cece, a 10-year-old girl, has spoken in complete sentences only four times in her life. However, each time she spoke, her words were lucid and appropriate. Her mother feels that speech for Cece is like a “traffic jam” where the thoughts don’t usually quite make it all the way to her mouth.
Solomon writes about another child, Carly Fleischmann, who seemed non-verbal until, one day at 13 years, she began typing. Naturally, her parents were astounded as they “realized inside was an articulate, intelligent, emotive person” whom they hadn’t known. Carly writes, “If I could tell people one thing about autism, it would be that I don’t want to be this way but I am. So don’t be mad. Be understanding.”
The take-home messages from these books are that we should not undermine the ability and intelligence of autistics to comprehend the world based solely on their expressive language skills. At the same time, we must respect the fact that they do indeed experience the world differently from us, while recognizing that they too have feelings that can be hurt and aspirations that can be thwarted by an unsympathetic non-autistic view. When an autistic person conveys his frustration with himself and the world, we need to be patient and persevere in trying to reach out. In a foreword to one of Grandin’s books, the acclaimed neurologist Oliver Sacks quotes a conversation he has with Temple while driving. In a voice choked with emotion, Temple told him, “I don’t want my thoughts to die with me… I want to know that my life has meaning.” Her words probably echo the unspoken sentiments of many an autistic child and adult. Perhaps, we need to listen with our hearts instead of our ears.
(The author is Director, PRAYATNA. Email:email@example.com)