By Dr. Jean Antoine-Dunne
Autism is frightening because it hits at the heart of what we consider to be most valuable in our society: the gift of reciprocal relationships, the capacity to communicate with each other, to share relationships and affection, to understand each other and to be understood.
When I met with Gillian Crane some few weeks ago I wondered why I was interviewing her for an article in Newsday on the subject of disability. There was nothing during the course of our interview that suggested that she has Autism Spectrum disorder. But she does.
Gillian in common with at least one percent of the population, has a condition that is so invisible that it has led to the death of one young man whose brusque reply on the street resulted in an attack that killed him. Perhaps if his assailant had realized that he was not being rude, but simply unable to communicate in the way that many of us in society interact and speak to each other, he would be alive today.
Autism is frightening because it hits at the heart of what we consider to be most valuable in our society: the gift of reciprocal relationships, the capacity to communicate with each other, to share relationships and affection, to understand each other and to be understood. My daughter Naomi tells me that autism is such a little understood and wide ranging condition that researchers have made the suggestion that many successful academics are actually autistic. This is because people with Autism Spectrum Disorder focus intently on a particular subject and become obsessed with a particular detail—an excellent trait if you are involved in research. Restrictive and repetitive behaviors and an abnormal need for order in very young children is, in fact, one of the signs that a child may be autistic.
Autism may become evident at different stages of childhood development and children may show different signs. Autistic persons not only have a social communication deficit, but may also be subject to extraordinary outbursts and apparently uncontrollable behavior. Children with autism often manifest with temper tantrums, sleep disorders and phobias. However normal aids or incentives to good behavior do not usually work. What is needed is a carefully developed program for early intervention by well-qualified staff who understand the triad of impairments and who have been specially trained to deal with the range of this condition.
There are savants, or autistic persons who have extraordinary gifts in a particular area. The publicity given to these cases has led to a myth that most autistic people are highly intelligent. But the poles are again wide. Persons with autism may have grave difficulty in learning speech, and may have severe learning disabilities.
However, both a gifted autistic person and an autistic person with intellectual impairment must face the many developmental problems aligned to this condition.
As a child Gillian was diagnosed by a clinical psychologist in Trinidad as having a learning disability, but tests in America when she was twenty-seven proved otherwise. There, Mr. Kenwyn Nancoo, a behavioral therapist diagnosed her as having Autism Spectrum Disorder. Autism is a difficult condition to diagnose and a significant number of parents report misdiagnoses. Gillian at age six was performing exceptionally well in school. She also appeared to be a happy child. However, increasingly, her mother noticed that there were vast fluctuations in her performance at school. She moved from high achievement to low scores. She also engaged in solitary play and had no friends. Gillian also began drooling. At this stage her classmates began calling her “retarded”. Her mother took immediate action and reported the bullying to the school authorities, who took action. The result was disastrous. The whole school, according to Loretta began labeling her daughter. Loretta removed her from this private school and sent her to another where she stayed until she was fourteen.
When some time ago I spoke to Mrs. Teresina Sieunarine, who is the President and founder of the Trinidad and Tobago Autistic Society, she emphasised that the problem with mainstream schooling is that children with autism run the risk of isolation and bullying. Teachers are not trained to cope with autism, even with children who are high functioning or who may have Asperger syndrome, which is categorized within the family of autism spectrum disorders. Persons with Asperger syndrome do not have significant language delays and usually function with normal intellectual capabilities
According to Mrs. Sieunarine, early intervention in the treatment of autism is essential. The lack of adequate treatment for Gillian meant that in school she had no real friends and talked to herself and her imaginary friends. The failure to understand her condition led to isolation. Loretta Crane says, “Gillian didn’t talk much and this led people to believe that she couldn’t talk.” She adds that, “we don’t live in a very welcoming society.” Gillian also developed severe trust issues.
Persons with autism have an impairment that limits them in often substantial ways from having reciprocal relationships with others. They may not even desire such relationships. According to Loretta Crane, autistic persons are very literal and do not understand nuances of language nor, indeed, body language. For Trinidadians who speak with their bodies and for whom language has many different meanings and who love picong, this is a real problem. Persons with autism begin to withdraw in the face of misunderstanding. In Gillian’s case, Loretta Crane feels, this withdrawal into a world of her own could have been prevented with proper therapy.
However, Gillian did have one wonderful buddy, a young woman called Paula Marcel who accompanied her on the bus and protected her during the period they both attended the School of Continuing Studies at the University of the West Indies. But Paula left the course and Gillian was once again left on her own and she withdrew after experiencing problems from authorities.
Gillian has now graduated with a certificate in the “Teaching of Reading” from the Open Campus of the University of the West Indies. The road to this has been very fraught indeed. Gillian panics easily and also has a coordination problem. According to Loretta Crane, Gillian was unable to access the help and responsiveness to her condition that she needed at tertiary level for much of her time in fulltime education.
The Chester Special Child Foundation offered a lifeline to Gillian and her dedicated mother. According to Loretta Crane, it is run by a wonderful man, Chester Lakatoo, who is the founder of this NGO that receives corporate funding like any other. The Special Child Foundation offers diplomas in conjunction with the Lady Hochoy Home. According to Gillian’s mother,
“The intent of the course was to train teachers in awareness and to give them some tools to address the needs of their students. […] Forty hours of clinical teaching was required to fulfill the requirements of the course to graduate. She was assigned to assist main stream students who had learning difficulties and she does so up to this day.” Gillian now holds a Diploma in Learning Disabilities and a Diploma in Special Education.
Gillian’s problem right now is her inability to find a job. According to her mother she has been trained for a job that does not in actual fact exist in this country. She wants to work as an assistant for special needs children. But there is no job in the offing, so she does voluntary work.
Gillian has sensory issues and, for example, cannot bear loud noises, certain smells, tastes and fluorescent lights. As she matures some of these issues will diminish, but the core problems will remain. She wants to work and to feel that she has a role and function within society, but at present this seems unlikely in Trinidad and Tobago.
“Gillian successfully graduated with a degree in Primary School Education from the University of New Brunswick. She hopes to gain employment as a teacher’s assistant in the education system. In the meantime she has continued her volunteer work at St. Crispin’s Anglican School.“
“She is committed to serving as an advocate for children with special needs. To further her advocacy, she filed a request for information with the Ministry of Education under the Freedom of Information Act. Her request sought information about the provisions being made in the education system for children with special needs. A judicial review claim was filed by me on her behalf, after the MOE failed to respond within the requisite 30 day period. The judicial review claim was settled when MOE eventually disclosed the information requested. We plan to use this information, coupled with her professional qualifications, to advocate for inclusive education in Trinidad and Tobago.“
Regards,
Loretta Crane