Please tell a little about yourself and your role with autism in Trinidad & Tobago.

I was born in Trinidad and have been living in the U.S. for 30+ years. My twin nephew was diagnosed with autism in 2002 at 13 months. He was progressing nicely with many early interventions until he ran away from a relative’s house on Thanksgiving Day 2006 in Florida and drowned in a nearby lake. Since then my sister Wendy has been giving donations to ASTT (Autistic Society of Trinidad and Tobago, a non-profit organization). With a planned volunteer visit this year, I realized how little T&T knows about autism. Parents and teachers unnecessarily punish children believing them to be disobedient and not listening. Schoolteachers tell me that they do not know what autism is and there are no special classes available for them. I spent time making a 1min video on autism for local television, through interviews, talking about autism in newspapers, and encouraging a parents-support group each Saturday at the ASTT.

What is the prevalence of autism in Trinidad & Tobago (if known)?

The numbers of autism is unknown because the timeframe to be diagnosed today for autism is 2010 and 2011, since there are only a handful of developmental pediatricians who can diagnose autism in T&T. Based on the 1 out of 150, the estimate is between 8,000 and 10,000 individuals with autism in a population of 1.3 million.

Within the general culture of Trinidad & Tobago, how aware are people of autism? How accepting are they of autism?

The general public know nothing about autism. The general culture is that individuals with autism are shunned. Parents keep their children indoors for fear of others making fun of them. They are referred to as being crazy and should be placed in mental institutions. However, if educated, people can learn to accept autism as it affects every race, culture, and socio-economic background.

What are the largest struggles for people with autism in Trinidad & Tobago? Is there a story you know personally that demonstrates this struggle?

The largest struggle is trying to find out why a child is not developing like other kids? What is wrong? Pediatricians are quick to put them on medication. The pediatricians and other medical staff need to be educated about autism. I am told that even the medical staff scorn and don’t want to touch their kids, thereby treating them like lepers. There is a 17 year old, 6ft young man, who is blind and autistic living with his single mother up on a hill. The only way to bring this young man down to the street is for the mother to take him on her back down through an unpaved narrow path. For 4 years, the government has promised to pave the path for her. Though a local church donated a wheelchair, it cannot be used in the narrow, uneven, declining slope from the 1 bedroom house they both share. My sister Wendy donated a commode to help wean him from pampers, a very very expensive item in Trinidad.

What have been some of the greatest successes in Trinidad & Tobago in regards to autism?

Autism is hardly recognized in T&T, therefore there are no known successes. However, during my visit in Trinidad, parents brought their 4 year old daughter to the ASTT seeking help. Through the help of friends who runs a for-profit school using the technique Floortime, the owner indulged me in providing this child one free day per week and results were seen in 3 weeks with this early intervention. In addition the 4year old spent an additional day at the ASTT, a parents support group which is run by a volunteer from India who has been working with children with autism for 8 years, and a parent who has been learning from her.

Is there anything else about autism and Trinidad & Tobago you would like to share?

T&T needs a team of developmental pediatricians who can medically diagnose individuals with autism ASAP. Then a team of clinical or school psychologists need to conduct assessments. (My daughter was a school psychologist for the Miami-Dade school district and is working on putting together a team from Miami to possibly conduct assessments during Summer 2009. However the medical diagnoses must occur first. Lastly, there is no plan for the early interventions. There are no skilled professionals who are educated to provide these early interventions, also there are no facilities set up to do so. These professionals, therefore must come from abroad, until the local residents gain the knowledge and education. In a meeting with the Minister of Health, who has agreed that this is an important issue, is looking for a proposal on what is needed for the September 2009 budget. The ASTT must constantly push and prod for assistance. They waited 1 year for a meeting with the Minister of Health. The Ministry of Education has yet to assist the ASTT. I will be working with the President of the ASTT on the proposal. Unfortunately, all of the Board Members of the ASTT have children with autism from ages 11 through 32 and being in the business for 17 years, have either given up or have less time to commit to the ASTT. With MyGoal, Inc. I will continue to promote autism awareness in T&T as I plan to return for a month in September 2009.

It is my fervent hope and prayer that AACTION Autism can help the unheard and silent children with autism in Trinidad & Tobago. Let’s bring them out from their darkness to participate with others, and bring the joy back into the lives of their parents.

Many, many thanks and God Bless.

Dr. Indra K. Mahabir
Educator & Board Member
MyGoal, Inc.
www.mygoalautism.org
868-663-0066 local contact

Intelek Consulting, President &
Adjunct Professor, Columbia University
(Teachers College), New York , NY
(610) 420-4988 cell