Maya Pandt lives with her son, Jurgen, on the Dutch Caribbean island of St. Eustatius. Here, as in so many other places, disability is a taboo subject. People do not like talking about it, many do not understand it and it makes others feel uncomfortable. Jurgen is her only child and he is autistic.
On this small island of about 3,500 people with limited resources in that field, it was at first very difficult to get a diagnosis. Jurgen had stopped speaking at the age of 13 months and could not stand loud noises. She could not comprehend his melt-downs and no one was able to offer solutions. While reading an article one day about a child who displayed similar behaviour, the thought occurred to her that Jurgen may be autistic. She found a mock-test online, and the results indicated he may indeed be autistic but that was still just a suspicion. An Expertise Center was eventually opened on the island in 2011. Jurgen was tested and at 7 years old, formally diagnosed with PDD NOS which falls under the autism umbrella. Equipped with that knowledge, Maya was then able to seek the help he needed. Jurgen is now 14, attends mainstream school, is fully vocal, loves to draw, is intrigued with the universe, the stars and the night sky and absolutely loves to play video games with his friends.
Misconceptions about autism pervade many societies and because it is not understood, families live with the stress that lack of knowledge and sensitivity brings. Jurgen’s meltdowns were usually at home but he was bullied at daycare and first 2 years of elementary school, the other children would hurt him and being non-verbal at that time, he could not tell his parents what happened. The society tries to see a look and not understand it has nothing to do with looks, but neurological “they say he doesn’t look autistic,” Maya expressed with dismay, but she knows her son is full of potential.
Thankfully, teachers on the island are now more aware, and some are being trained to work with special needs children; other kids on the island have since then being diagnosed with autism and, like Jurgen, attend mainstream schools. Jurgen has a high IQ, is able to learn at his own pace and some of the previous frustrations Maya felt has dissipated. But there still remains a lot of work to be done on St. Eustatius.
Maya believes that even now, parents of children with special needs are not as vocal as they should be. She wants people in the community to understand that because a child sees, hears and sometimes behave differently to others, they are still intelligent and have a lot to offer to society. Maya’s need for community awareness of autism has led to the creation of the JTL Autism Foundation (named after her son, Jurgen Timothy Leon) in March 2021. The Foundation will provide much-needed support to parents and children on the spectrum. They will conduct workshops, partner with nutritionists, speech, occupational and motor skills therapists and other professionals to educate, diagnose and treat people with autism on St. Eustatius.