AUTISM - SO MUCH CAN BE DONE WITH KNOWLEDGE

Kids who can’t say Mommy                                          

Two years ago Joan McKenna Kerr (right) and her colleagues from the Autism Association of Western Australia [AWA] scoured East Java for interns.

Their offer was nectar:  A training program for health and education professionals learning early intervention techniques for autistic children. 

The location – dazzling Perth on the placid Swan River.  Cost – zero.  Air fares and accommodation  included plus allowances.

The sting? Study for six weeks, eight hours a day, six days a week plus homework. Political junketeers  checking golf courses unwelcome.

Hundreds applied.  Small teams were picked from five cities – a total of 20 people.  Psychologists, teachers, therapists and nurses.

“We wanted those with passion and a real commitment to helping kids, not those motivated to advance their curriculum vitae or open private practises on returning to Indonesia,” said McKenna Kerr.

“They had to display competency and leadership.  They had to work with local people.

“We insisted on high level English but saw good candidates with limited language skills who in a typically Indonesian way would get support from their friends.  We had to adjust.

“This was the first time we’d run such a project.”

With the students long back in their homeland McKenna Kerr, the chief executive officer of AWA, and Tasha Alach, the organization’s executive manager for early childhood services returned this month (Oct) to see if the exercise was worthwhile.

In short the answer is: Yes, plus.  So more training will follow.

In Blitar at the Sekolah Dasar Luar Biasa [State special elementary school] they reunited with  principal Suud Wahyudi who’d still have a stamp-free passport had AWA stuck to its rigid  requirements.

“We learned much about autism and information that can be used to help parents and children live a better life,” he said.  “It’s made a difference to the way we teach.”

Said parent Lilik (above) :  “My daughter Revita Selvadita, 17, has moved ahead.  She has more confidence and plays with others.”  

Commented McKenna Kerr: “Our decision was vindicated.  The school, like others we’ve checked, is outstanding.  It’s implementing many of the techniques we taught. 

“Apart from small size classes [18 teachers care for 133 kids, including 20 who are autistic], and grouping children by skills, not age, they’ve introduced visual cues. Autistic kids stress easily; they don’t respond well to words.”

Classroom walls have Velcro strips with small pictures of activities, such as catching the bus home, play time, music therapy and rest periods. The pupil peels the picture and heads to that activity.  The system also works for deaf children.

Less than one per cent of the population has a developmental nervous disorder grouped under the term autism, coined last century from the Greek  autos meaning self.  It’s usually noticed before age three [See breakaway] when the child isn’t communicating.  Four of every five autistic kids are boys.

There’s probably a genetic cause, though factors like medical problems may have a role.  There’s no cure; research continues worldwide but the situation isn’t hopeless.  The AWA says children given the right training can progress, attend a normal school and eventually get a job.

At a new Autism Center in Blitar parents are also schooled on handling their offspring.  Shouting and scolding is a waste of time and emotion – the child isn’t being naughty but has a neurological defect.  Positive behavior support works best.

Having a hyperactive child unresponsive to standard conventions often overloads families; marital breakdowns can be collateral damage.  Parents’ emotions swing between deep distress and fierce determination to help.

Born and educated in Ireland where she took a degree in sociology, McKenna Kerr has no family members with autism.  She was in Aceh for two years last century with her husband who was involved in a health project.

“I didn’t see children with disabilities,” she said.  “Handicaps were considered a curse for wrongdoing.  The best way to help is through early diagnosis and therapy, not hiding the child.”

In Perth she started working for AWA, a not-for-profit agency funded by State and Federal Governments and donors.  The association with Indonesian schools is though the Western Australia-East Java Sister State agreement, but the idea first came from Indonesian students concerned that the Perth facilities weren’t available in their homeland.

Links have also been made with Surabaya’s Airlangga University where 48 teachers and therapists are being taught to use AWA’s techniques.

“Not all ideas travel well between cultures, but these are ripples in a pond,” said McKenna Kerr.  “We’ll be back next year to run workshops on communication; we’ll include our former interns as local instructors.

“Indonesia has made huge advances in caring for autistic children.  Even candidates for local government are recognizing the need.

“Australia and Indonesia are neighbors.  We have a responsibility to share knowledge.”

Tantrums and techniques

How do I handle a disruptive child who continues to throw sand?

The teacher’s plea at a Q & A session at Bhakti Luhur Catholic institution in Malang led by former AWA intern Sister Elizabeth Witin (right) drew this response from McKenna Kerr:

“Imagine this: You’re in a foreign airport; no-one speaks your language and you can’t understand the signs.  That’s the world of an autistic child.

“You’re in a room with 20 TV sets each on a different channel.  That’s why they retreat to routine. We know this from empirical research.

“Autistic children can’t read situations or people well.  They want to escape from environments they find overwhelming.

“They’d rather not be challenging.  Saying ‘no’ does nothing – teach to their strengths.

“All children are different.  Structure the day, stick to routines.  Teach the child to calm himself. Use color codes and pictures that can be understood, though it takes time to realize an image is a symbol for the real thing.

“We publish practical tips for teachers and parents.  Work on the building blocks of learning. It’s not easy, it takes time, but it can be done. We need to commit ourselves to the child’s needs.”

Love is all you need – but in truckloads

Like most parents who discover their child has autism, the message was delivered slowly and corrosively.  For Eny Susilowati, 33 and her videographer husband Farid Mukh Pakhrudin, 30, it wasn’t till their daughter Elvina Salsabila Alfany was in her third year that they started seeking advice.

Other mothers were hearing the most rewarding word in every parent’s lexicon – Mommy.  But no magic for Eny.

“Elvina wouldn’t make eye contact,” said her mother.  “Her language was gibberish.  She kept spinning around and couldn’t concentrate.”

The eventual diagnosis was an asteroid hit.  “I was so depressed; we knew nothing about autism. There are no genetic flaws in my family or my husband’s.

“I wept and wept and thought about killing myself.  Farid persuaded me that I could not leave Elvina alone; we had a joint responsibility.  He is such a good man and shares our daughter’s care.

“Like all parents I wondered what I’d done wrong. I thought God had punished me.

“I bled during pregnancy and had contractions long before birth.  I was eating a lot of seafood.  Now I fear it may have been polluted.

“I got emotional and angry for no reason; it was not a good pregnancy.

“After the diagnosis we sought help from the mosque. I was told to bathe at 3 am with my daughter.  We all got sick afterwards.  Many doctors don’t know much either – we’ve had to go to Surabaya [a six hour drive] to find the best medical help.

“Since then we’ve been determined to do our own research and work out the best upbringing.”

That includes putting Elvina on a  non-dairy diet and trying dolphin assisted therapy where the child interacts with the intelligent sea mammals.  This is a highly disputed technique condemned by some medical authorities as quackery.

However after a costly session in Jakarta Eny said her daughter started to eyeball her parents and can now repeat counting up to ten in English.

Elvina’s parents are regular visitors to the Autism Center where treatment is free.  While the children get therapy the adults chat.  Inevitably a busy market of ideas and experiences pops up in the lobby; support reinforces resolve.

“I realise that we have so many shared problems,” Eny said.  “We wanted another baby but that plan has been cancelled.  All our energies must go to helping our daughter.

“The special school is good, but Elvina won’t go there. We want her to be in a normal school. This is my dream.  That is my commitment.

“I tell her:  Elvina: In my eyes you are normal.”

(First published in The Jakarta Post 4 November 2015)

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