April is Autism Awareness Month. This is the story of one very special, little boy ...
Jake
Jake is a six year old boy. His older sister takes him to the swings. All the other kids there are playing together, pushing each other on the swings and spinning the merry-go-round as fast as they can. Jake finds a patch on the soil, and starts arranging leaves in a line. At noon, the church bells ring and the petards from the nearby village feast go off. All the kids cover their ears, but Jake carries on as if oblivious to what's going on.
When it's time to go, Jake's sister takes his hand. On the way, they come across one of his sister's friend, whose phone starts buzzing. Jake is deeply irritated and starts flapping his hands in annoyance. Jake's sister tries to calm him down, embarrassed that she cannot explain this sudden meltdown to her friend.
On the way home, Jake takes note of all the car number plates, reading them aloud, one after the other. His sister is amused at his fondness of numbers and letters, and stops to give him a hug. He hugs her back, but is not sure if he likes the hug or not.
At home, Mum's preparing Jake some food. He's a picky eater. He does not want any of the different foods on the plate to touch each other. He wants the chicken, potatoes, carrots and peas all well separated on the plate. God forbid if any of the ketchup messes his food. His mother is used to his little fads and quirks. While the food is being prepared, Jake sits in the TV room, on the sofa, humming a tune and rocking back and forth. It relaxes him no end. He's also being entertained by the spinning of the ceiling fan.
After dinner, Mum sits on the floor and gets the toy-box. There's a vast collection of model cars and trucks which Jake loves. He knows their names, their make, their year of manufacture and how fast they run. He lines them up one behind the other. Then he decides to play with them. So he turns them upside down and spins their wheels - all of them - spin, spin, spin. Jake squeals in delight.
At school, Jake does quite well. He's a good reader, although his choice of books are always from the non-fiction area of the library. Jake cannot relate to Enid Blyton type stories. He wants to know facts, numbers, names, information. He's picked up books about space, cars, the Serengeti and one about telling the time. During playtime, Jake gets chosen to play with one group of friends. They play tag. His teacher takes time to explain the rules before the game starts. She is well aware of 'how he is'. Jake cannot figure out rules just by seeing a game, or just by playing any particular game. Sometimes teacher has to draw pictures and make a 'rule book', which explains everything that is taken for granted by other people. So in Jake's rulebook one can find 'How to wash your hands', 'What happens when it rains', and 'Going on an outing'.
While other children have their cliques, Jake has only one friend - a buddy - who loves Jake's knowledge of cars and space. Sometimes Jake gets bullied. Some others think that he’s a weirdo, and he’s an easy pick for them to poke fun at.
Jake is one in hundred. One in hundred children is being diagnosed as having a degree of ASD. ASD is Autistic Spectrum Disorder. A child suffering from ASD can range from being severely autistic to having Asperger's syndrome, which is a much milder form of the condition. No child with ASD is exactly the same as another. The diagnosis is complex and not all children tick the same boxes.
Sometimes people go through life, some becoming University professors, not knowing that they have Asperger's syndrome. It is thought that Einstein was an 'aspie' ... Bill Gates, Isaac Newton, Virginia Woolf, Goethe ... the list is endless. While these people have difficulties maintaining relationships, they are very focussed on their 'specialisation' (something which they are super-interested in, eg numbers, cars, letters etc).
What puts a person on the Autistic Spectrum?
There are three basic criteria:
1. Non-Verbal and Verbal Communication
Non-Verbal Communication: Children with ASD don’t read signs ( like facial expressions) like everybody else does. For example if an ASD child is harping on about outer space, after ten minutes the non-ASD person who is listening will normally show signs of boredom and annoyance. But the ASD person keeps on and on about outer space, because signs of boredom (huffing, shuffling of the hands and facial expressions) from the other person are not easily read.
Verbal Communication Difficulties: Some Maltese children who have ASD speak to their parents in jargon and accents they hear on TV. A child with ASD might speak in English only, and in an American accent to boot. Some have echolalia - they repeat words and phrases constantly. Some of them don’t understand sarcasm and jokes - telling them ‘Hawn kerha’ jokingly might be encountered with some frowns and sulks from a person with ASD.
2. Social understanding and interaction
ASD children are uninterested in society at large, the extent of this disinterest being different from one child to another. Some have difficulty in sustaining long term relationships with other people. They can make friends, but they don’t know how to initiate the friendship. The good thing about this, though, is that social behaviour can be taught. Social groups are very important for teaching these children social skills, making small talk and showing empathy. They want friends ... they need friends. They make very good on-line friends, but one must insist on them making an effort with face-to-face communication.
3. Imagination and Flexible thinking
ASD children do not play with toys the same way as other kids do. As with Jake’s case, further up, they don’t race their cars, but flip them over and spin their wheels. Their play involves flapping toys, spinning them, or lining them up. Some even have an inclination to collect stuff such as bottle-tops or stones. They love routine, but life is not all about routines. Fortunately enough, though, this can be taught too. One can teach and prepare a child qith ASD to deal with disruption in his routine just as one can teach an ASD child to play, to adhere to rules and to interact with others.
The three criteria described above are called the 'triad of impairments', common to all children on the Autistic Spectrum. Combined with these, a child might also be hypersensitive to certain sounds, fabrics and colour mixtures.
Autism is a relatively 'new' condition. Some say that before now we didn’t have the means to diagnose children with ASD, so we just sent the ‘weird’ ones to Mount Carmel. Some say it’s a host of factors in the modern world (pesticides, genetic engineering) that have brought forth an increase in children affected by the condition. So please, if your child's teacher does not know anything about it, do bear with her! Many of these so-called newer conditions weren’t part and parcel of teacher training programmes until recently, but things have now improved in leaps and bounds and a lot of teachers and L.S.As are very interested in, and knowledgeable about, autism nowadays.
Are you an ASD person?
Here is a very good test, devised by the 'hero' of all ASD people, Simon Baron-Cohen(cousin of Sacha, the guy who plays Borat).
His theory of autism is very interesting and uplifting too. Do not be alarmed if you get an ASD result … you’ve coped well so far and you’ll cope well in the future! Your next step is to go to a certified psychologist and get assessed. Knowing about your condition will help you understand why you see things in a certain way, and how to cope with them.
Here is the test :
http://www.wired.com/wired/archive/9.12/aqtest.html
If your child has ASD, learn as much as you can: buy books, read on-line, attend workshops. You will learn how to tackle your ‘problem’ with support. You will also learn about the different therapies, how to deal with your child, what activities will best suit him, how and when to break the news, about his condition, to your child and how to help your child through adolescence and adulthood.
And in Malta?
There are many workshops and courses run by the Training Centre that’s besides Mount Carmel Hospital. They are run by the Speech-Language Department and the phone number is 21 230822. There are also groups run by Inspire (ex-Eden Foundation and Razzett tal-Ħbiberija).
Want to know more?
Here are a some of the best links I know of :
http://www.nas.org.uk
http://www.autism-society.org
http://www.autismresearchcentre.com/arc/default/asp
http://www.sunfield.org.uk/asd.htm
Good books:
The New Social Story Book by Carol Gray
How to Support and Teach Children on the Autism Spectrum by Dave Serratt.
And if you are really interested, read the books written by Temple Grandin, an autistic person:
http://www.templegrandin.com/templegrandinbooks.html
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