Families of People with Autism on Curaçao Need Support

Friday, May 16, 2014
Atrium Ballroom (Marriott Marquis Atlanta)
R. Pin1 and E. M. Blijd-Hoogewys2,3, (1)Department of Social and Behavioural Sciences, University of the Netherlands Antilles, Willemstad, Curacao, (2)Autism Team, INTER-PSY, Groningen, Netherlands, (3)Department of Developmental Psychology, University of Groningen, Groningen, Netherlands

On Curaçao, a Small Island Developing State, support systems for people with autism are still developing. Over the years, a lot has been done by local healthcare facilities. Several local psychiatrists, speech therapists, psychologists, and other professionals dealing with autism became more experienced and knowledgeable about the support needed. Also schools, especially special education, have taken steps to facilitate children with autism.

Despite the apparent improvement in care and support, there are indications that (families of) people with autism still lack support. Therefore, this study looks at a wide range of issues, with a focus on problems experienced in the diagnostic process, treatment, housing, education, work and leisure, socializing and wellbeing.


The objective of this study was to gain insight in the need for professional support in people with autism living on Curaçao and their families, to identify the gap between this need for support and the availability of resources and facilities. The local parents' association ‘Asosiashon pa Autismo Curaçao’ (AAC) will use the results of this study to bring the needs experienced to the attention of social organizations and the government.


Using a mixed method approach, first a focus group (qualitative research) was held consulting 7 parents from the AAC concerning their needs for support for their children with autism. Next, these results were used as a local input for the construction of a questionnaire (quantitative research) based on the Dutch Society of Autism 2013 questionnaire. 32 parents and caregivers of children with autism (29 mothers, 1 father, 1 teacher and 1 therapist) filled out the survey online or hardcopy in the Dutch or Papiamentu language. 


The study reveals that the diagnostic process takes long and in many cases parents still need to go abroad to get a correct diagnosis. Parents express the need for a multidisciplinary team and for case managers. After diagnoses, parents experience that there is no care or treatment plan and no guidance to the right facilities. Only a few schools have autism experience; in some cases children are rejected at all schools and are not able to receive any education. Parents perceive housing facilities to be scares; although in the small community family provides a strong safety net, there is a strong need for assisted living, as parents fear for the time that they will no longer be around. The respondents are aware of leisure facilities on the island, but they refer to the broader range of possibilities in e.g. Venezuela and the Netherlands. A job coach could improve job opportunities. Many parents experience financial difficulties. Furthermore, parents perceive there is still a taboo on autism in the Curaçao community; they fear that a lot of children stay undiagnosed and might end up on the wrong pathway. They see a role for the government.


To improve the professional support on Curaçao for (families of) people with autism, institutions should collaborate to facilitate the route from first diagnosis to integrated support for care, education, living, work and wellbeing.

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