Avia Collinder, Outlook Writer

Maia Chung-Smith interacts with Quinn, her son. The autistic male is brilliant at computers and maths. - Photo by Avia collinder

Too long in her cocooning chrysalis, Maia Chung-Smith was recently forced by the needs of her autistic son and the pain of parents in a similar position to spread her wings.

Now, less like a butterfly and more like an angel, Chung-Smith recently created Jamaica's first Autism Foundation in collaboration with a coalition of professional volunteers.

The foundation will be launched on April 28 in sync with international activities, including World Autism Month - April - and the very first World Autism Awareness Day (WAAD) HELD on April 2.

The new autism foundation is intended to be life-changing for those affected by the physiological condition.

Autism is defined as a brain disorder that affects development and can affect a person's ability to communicate, relate to others, and interact with his or her surroundings.

Signs of autism usually appear at age 18 months.

While WAAD celebrated the unique talents of those with autism (scientist Albert Einstein and writer Emily Dickinson were said to be autistic), here in Jamaica, the autistic individual is more likely to be treated as a 'mad person' , persecuted and ostracised, notes Chung-Smith.

The television journalist, who will turn 33 on the day the foundation will be launched, states that, "I have got too many calls from parents on the edge - who want to commit suicide because they are frustrated and depressed."

Blessed experience

While her own experience has been a blessed one with much support from her family, Chung-Smith feels irresistibly compelled to do something to change the situation of other Jamaicans, especially those who live in rural parishes with their autistic children.

According to Chung-Smith, the support systems for autistic children are non-existent, and repeated, anecdotal evidence also shows that families have been broken up because of the condition. Men have left their wives, she said, after discovering that the male child born to them was autistic or otherwise disabled.

Her own story began with years of denial and then sadness at the discovery that Quinn, her third and last son, was affected.

She had been in denial, she said, although she had had her suspicions when he was a few months old and began the characteristic rocking motion of the autistic child.

During her first pregnancy, Chung-Smith, a voracious reader, had turned herself into a parenting expert by reading everything available to her on child rearing. So, she was aware of the condition, but kept quiet about it until Quinn turned three years old and still would not speak.

Tests at this age revealed that he was indeed autistic. Chung-Smith and husband Wykham quickly set aside feelings of sadness and set about searching for therapy and schools.

It was a challenge which they accepted with a stiff upper lip, although they were stunned by the "super costs" associated with getting speech therapy.

"This was 2005 and the cost was $4,000 an hour."

They were also distressed to find out that there was no public school with teachers trained to tutor autistic children.

The parents were grateful to discover Promise Learning Centre in Kingston, where much of the educational programme was geared to provide a suitable learning experience for the autistic child.

Autism is a spectrum disease, which means that it manifests itself in different ways in most individuals. Most, however, are locked in a world of their own and have difficulty developing social skills which are necessary for survival.

Many are brilliant in their own way. Chung-Smith's son has tested with a high IQ in the areas of mathematics and information technology and taught himself to write, colour and draw, and can, with the help of therapy, be assisted in acquiring the skills needed for independent living.

"With treatment, we can maximise the potential of every autistic child," says Chung-Smith.

The foundation aims to lobby government to train teachers in public schools and caregivers in the health services for the special needs of the autistic.

Ignored in public hospitals

Chung-Smith relates the experience of autists who have been abused or neglected and ignored in public hospitals because health-care workers are not aware of their unique behavioural traits, which sometimes makes them uncooperative.

It is the desire of her heart, says Chung-Smith, to see the establishment of a public, government-funded school for autistic children. She also points to the need for support for Promise Learning Centre, which is in need of relocation, equipment and funding support.

The Autism Foundation has established an autism hotline manned by volunteer Dr Charles Thesigar. Parents with autistic children can access free counselling by calling 293-3610.

Quinn has done very well, Chung-Smith discloses, as the entire family, including older brothers, nine-year-old Sinclair and 12- year-old Wykham, treat him quite normally and take his special needs in their stride. The fact that the socially challenged boy is willing to be kissed is one sign of how well he has progressed.

"I am not embarrassed by my son. I am proud of him," the mother states. "I just want to see him get married and be happy when he is older. The odds of doing this are low."

Admitting that she is run off her feet by motherhood, her career as senior television broadcaster and by her work with the foundation, the journalist states that she would not have it any other way.

"I have been on this path for a while," she states. The Autism Foundation is a charitable venture born of the pain of knowing that too little is being done for the disabled in Jamaica and, in particular, for those who have been born autistic, and for whom there is too little awareness and no education policy. In her usual proactive style, Chung-Smith decided to do something about it.

She has written her first book, Maia's Take,with the intention of raising funds for the foundation. She invites other Jamaicans to join her in making the island a kinder place for the disabled, and those affected by autism, in particular.

Email Maia Chung-Smith at mcautismfoundation@mail.com.