Is Jamaica prepared for spike in autism cases?

Patricia Johnson, Contributor

I listened to, as well as read recent news reports about a child with autism in a day-care facility being physically abused allegedly by the director. Although it was unnecessary to mention the director's parentage, the abuse had to be brought to light. It made me reflect on the many years my son was in day-care and/or after-school facilities, and also the death of a little boy with autism who some years ago allegedly died at the hands of an associate of his mother's - someone who had difficulty coping with his behaviour.

The number of children with autism will probably increase based on trends over the last 10 years. In 1997 when my son was diagnosed, it was 1:10,000, I was told; today, according to the Centres for Disease Control in the United States, it is 1: 91/110. Is Jamaica prepared in the important areas of education and child-care services; in support services such as speech and language therapy, occupational therapy, behaviour modification? The answer is a definitive 'No'. Capacity building at the most basic levels have not been achieved. This requires, however, well-trained professionals (not just those repeating what they have read, but having exposure to the implementation of research-based practices).

Features of autism

Autism is one of the pervasive developmental disorders. Diagnostic criteria focus on three areas: behaviour, communication, and social interaction/skills. A co-occurring condition such as mental retardation, sensory dysfunction, or depression is also likely. Hyperactivity, impulsiveness, and short attention span are also common secondary features. It is widely believed (based on research reports) that over 70 per cent of children with autism also have mental retardation. Lately, this has been challenged but regardless, the percentage is high.

A smaller percentage is non-verbal (available data suggest a high of 50 per cent, according to Weiner, M., ASA 2006 conference presenter). The combination of autism, mental retardation and non-verbal skills in a child makes abuse easier for a likely predator or bully; and they come in all sizes - they are not just adults. Parents, therefore, need to be very vigilant in detecting abuse which can be physical, sexual, psychological/emotional, or other. Parents must be aware that abuse can be in the home, school, church, anywhere.

In the home, there can be abuse from siblings, friends of siblings, visiting relatives, even a parent, etc. In schools and day-care centres, there can be accepted/open, and/or hidden abuse. Abuse of formal disciplinary methods such as having the child in 'time out' for extensive periods of time, or extensive use of restraints can easily become 'normal'. There can also be 'neglect'. A child sitting in the same spot in school every day with no one facilitating learning, doing nothing but looking forward to lunchtime, is being neglected. Attention also needs to be paid to the different levels of endangerment - low or high, this is still worrying! A situation that seems to present a low level of endangerment can quickly become disastrous when a child with an IQ in the severely mentally retarded range is present.

Better protection needed

If a child is unable to communicate, has behavioural problems, and also has low cognitive abilities, people are at liberty to say anything, and not be particularly truthful about the cause of the child's injuries or any action by him/her which suggests 'abuse', that's just the reality! We need to think about how these children can be better protected. The cases we have been exposed to have been informative - these situations should not have occurred; but what about the hidden cases? How do we get those out in the open and deal with/stop them?

Everyone, from parents to professionals and paraprofessionals, who interacts with children who are at this level, needs to be trained to some degree to get and maintain the best behaviour from them. Basic principles of behaviour modification need to be taught to these adults. This will make it easier for the child to achieve learning objectives, and will lower frustration levels (and even, likely aggression) of those facilitating learning/care.

In addition, institutions should not have children who, after a reasonable period of interaction and/or observation, they realise they are not equipped professionally to teach, or whose behaviours they are not trained to manage. This type of 'patronage' does not benefit parent or child.

Patricia E. Johnson is a specialist in Exceptional Student Education and director of the Victory Pointe Learning and Resource Centre. She may be reached at victory99967@yahoo.com. Feedback may also be sent to columns@gleanerjm.com.