The music inside

But the Beast was a good person...the Prince looked on the outside the way the Beast was on the inside. Sometimes people couldn’t see the inside of the person unless they like the outside of a person. Because they hadn’t learned to hear the music yet.”
– Karen Kingsbury, ‘Unlocked’
Karen is a motivational novelist with many award winning books to her credit. In one of her award winning novels, Holden Harris, 18, is locked in a prison of autism, bullied by kids who don’t understand his quirky behaviour.
Holden is a happy boy who lives in a world of his own without harming or intruding into other people’s lives. He is discovered by cheer leader Ella Reynolds when Holden stops by, clearly drawn to the music. At the same time Ella makes a dramatic discovery. Long ago, her parents and Holden’s parents were good friends, and she and Holden played together until his diagnosis of autism, at which time Ella’s mother distanced herself from the friendship. Ella then starts educating herself about autism and hears the music inside him.
Most high functioning autistic individuals or those with Asperger’s syndrome are not as lucky as Holden. They are never ‘discovered’ because most of them do not have an Ella who is willing to listen to the music inside. They live under the label of autism and do not fall in the category of ‘neurotypical’. Parents distance their ‘normal children’ from them. Even their own siblings are sometimes unwilling or unable to accept their idiosyncrasies. Some consider lack of eye contact as a demotivating factor to attempt to communicate and some hold the ‘odd’ behaviour as a hindrance. A number of high-functioning adults on the spectrum or suffering from any other disability said they suffered from poor self-esteem as a result of what they heard being said about them and the way they were teased and made fun of.
It is a common belief that only ‘normal’ people are loveable and are able to love, be happy or achieve success in life. I have known people with high functioning autism, Asperger’s and other disabilities who believe that ‘normal’ people are better than them and that they should learn to settle for less. Jerry Newport, an author and public speaker with Asperger’s syndrome, in his book ‘Your life is NOT a label’, states, “People born different can accomplish the most when the aim is not to normalize, but to simply help the person make the best of his unique set of talents and challenges”.
Security, predictability and structure make an autistic person’s life manageable. For them, the world is unpredictable with too many sensorial demands that are difficult to process simultaneously. Too many instructions and directions are incoherent thus creating anxiety and stress leading to temper tantrums and other behavioural issues. All attempts by parents, caregivers and teachers are then focused on correcting and/or punishing that behaviour. What they see is only the tip of the iceberg, completely ignoring the sensorial overload beneath and the need to move, roll, spin and twirl to make sense.
Behaviour problems also arise when the child is deprived of different forms of movement and is forcefully occupied to do table work. Gerry emphasises the use of structure in his book, “Knowing my schedule made life manageable. The schedules were a set of rules for what to do with that amount of time. I learnt that the best way to avoid misery was to obey all rules! Rules and schedules appeared in my ocean like ice floes. I jumped on them whenever possible”. Whether it’s Temple Grandin or Gerry Newport, people suffering from autism and Asperger’s have managed their lives effectively with the help of visual structure, which they developed for themselves even in their lives as adults.
Some schools of thought still have reservations about visual structure and communication. They are concerned that it might develop dependency and the children may not be able to function effectively on verbal instruction. Visual memory is an autistic child’s ‘tool’ to connect to the world. They can hear the sound but are unable to perceive the meaning, especially those who are on the severe end of the spectrum. Loud sounds and conversations hurt them.
Many remedies are presented as cure and various treatments have been invented ranging from hopefulness to quackery. A number of these treatments are being sold as cures to autism – including diets, medicine etc – and parents are then off on a totally different tangent. The fact is that autism is a way of life, a culture that needs to be understood. One doesn’t grow out of it but learns to live ‘with’ it without being forced to be ‘normal’.
Providing their children with the best education is every parent’s priority. But mainstreaming a child with special needs requires a specialised set of skills and adaptation in the environment. In our part of the world, parents have no choice but to trust inclusive or mainstreaming institutions to educate their severely autistic children. I have seen children who need unrelenting constant support for even the most basic functions of their daily lives – getting up and asking for food or a glass of water – being sent to schools with the expectation that they will learn with other children.
These parents who are already sleep deprived, depressed and financially strained are misguided for years until the institution comes to the conclusion that they are not trained to deal with such kids or that the child is incapable of learning. In a state of confusion, parents keep switching schools while the child loses the most critical years of learning and development. These formative years could have been spent to teach him/her the activities of daily living. A child who was unable to learn to read or write could have shown some interest in gardening, art, pottery etc, thus learning a skill, enjoying him/herself and gaining some personal and financial independence.
The world is beautiful because of its diversity. People of one culture are eager to explore and learn about people living in another part of the world. It’s the same with autism and other disabilities. The label ‘disabled’ should not take away from them the right to be understood. It is just another way of living in this world, a culture within. These differences are just like the many beautiful colours in a rainbow and the various notes in a symphony – distinct from each other but together completing the symphony. Each retains its own colour, depth and melody – a manifestation that nature has created so many ways to exist in this world.
His creation can never be ‘incomplete’ or ‘dis-abled’. It’s another tune waiting to be heard and another culture waiting to be understood. Seminars, lectures and workshops are an important part of creating awareness but to actually make it beneficial for the people on the ASD spectrum, parents, educators and caregivers need to spend a few hours of their day in the ‘ASD’ world, put themselves in their shoes, and respect them as a culture not just as a disability.
The writer is a speech-language pathologist and CEO of The Circle: Caring for Children.
Email: Sadafshah01@hotmail.com