What is this autism you talk about and how can I make a difference?

by Leo Edwards

2 April 2018 marks the 11th year acknowledgement of World Autism Awareness Day. Communities and families from across North America will be joined by international communities around the globe to recognise the lived experience of people living with autism. The objective of this world autism awareness campaign is to foster greater understanding, consciousness and support for people on the spectrum as well as to continue the national conversation on autism.

A few days ago, I was having a conversation on disability with a friend on mainland Grenada. She asked me “what can I do to help out with this “autism thing” you are always talking about?” I found her line of questioning interesting for 2 reasons. First, “this autism thing” is a real and at times complicated experience that many individuals and families embody. Second, I was thrilled by her interest and was equally excited to share some practical things to consider on autism awareness in the context of Grenada in particular, and across the Caribbean region.

What is Autism?

Simply put, Autism or Autism Spectrum Disorder is a neurodevelopmental disorder or impairment in the brain or central nervous system that causes some people to experience challenges with communication or expressive language, difficulty with social interaction or social skills and repetitive behaviours and routines. For example, someone on the spectrum might have a preoccupation with cars or assemble toys, or they may have a noticeably restricted repertoire of activities and interest. It is not certain what causes autism, but it is suspected that it might be a combination of genetic and environmental factors. However, what has been established is that early intervention and support can improve the quality of life for the person on the spectrum on the family.

Given the limited resources available in Grenada how do we even begin to make a difference?

How can you make a difference?

In a previous article, I suggested 5 points as a starting point towards autism awareness and greater inclusion for people on the spectrum in Grenada. I will build on some of these points with some additional practical next steps

First, I will reiterate the importance of joining the Autistic Foundation of Grenada Facebook page and consider becoming an active member. The mission of the foundation is to increase the awareness and understanding of Autism Spectrum Disorder in Grenada, Carriacou and Petite Martinique, talk to your friends and neighbours about joining to continue the conversation on autism (www.facebook.com/AutistcFoundationOfGrenada/).

Last year I was pleased to see that Netherlands Insurance in collaboration with the Autistic Foundation of Grenada, established “Light It Up Blue“a signature campaign of Autism Speak in recognition of autism month. More business should follow the lead from Netherlands insurance from coast to coast and light up their buildings blue to facility growing autism awareness. Furthermore, citizens inclusive of our primary and secondary students from across the tri-island state can also become involved by wearing something blue on 2 April to show support of the understanding and acceptance for people on the spectrum. These Grenadians can also take a selfie and share the picture on social media with the #LightItUpBlue to contribute to the national conversation and offer a perspective that is uniquely Grenadian (see https://www.autismspeaks.org/wam/how-to-liub).

While it might be useful to join facebook groups and online campaigns in an effort to increase the awareness of autism and other disabilities doing so without context or understanding can be futile. Therefore, it is critical that people on the spectrum, their families and Grenadians, in general, continue to engage broadly with literature from credible sources on autism aetiology, understanding and treatment. Further, as very little is known about the experiences of autism in the context of Grenada in particular and across the Caribbean, we must create an environment and a safe space where people on the spectrum and their families can feel encouraged to share their stories and experiences. As a society, we MUST make every effort to eliminate the culture of enclosure that pervades our local communities when it comes to issues regarding autism, special needs and other disabilities. Taking into consideration our unique culture, we must creatively develop indigenous approaches that are open, vibrant and inclusive of people living with ASD, their families, caregivers and community members to address the very many challenges and opportunities for those on the spectrum and other disabilities. This is only possible through consultation, collaboration and partnership with government bodies, NGOs, the business community, private citizens and more importantly all members of our society.

Although the resources listed below does not directly address our exceptional and cultural needs as Grenadians, it proves a solid foundation for autism from which we can build. The free online course from the University of Kent will help us understand more about autism, including diagnosis, the autistic spectrum and life with autism https://www.futurelearn.com/courses/autism .The Geneva Centre a leading autism service provider in Toronto offers a free online series “Introduction to Autism.” For full access to this site, you first need to create an account http://elearning.autism.net/?lang=en/

As a devoted Grenadian in the diaspora who is equally passionate about autism research, best practice and social justice I encourage all Grenadians to unite and work together to raise awareness about autism and other neurodevelopmental disabilities. We can, and we must do better!

The preceding information is not meant to diagnose or treat ASD and should not replace consultation or support form a qualified healthcare professional.

Leo Edwards is a PhD Candidate Education, and social justice focused on Autism research. He is a clinician at a leading mental health and addiction hospital in the city of Toronto and a facilitator with the University of the West Indies Open Campus.

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One thought on “What is this autism you talk about and how can I make a difference?

  1. Marisa A Grey

    Good read! Autism is a subject that have not had much exposure to the general public. The lack of exposure and a general consensus on keeping this disorder as a stigma that doesn’t need to be discussed openly needs to go away, as there is a need to properly diagnose and treat children, as well as to educated parents, caregivers and teachers about how to recognize signs of autism and how to care for children with these disorders. The article did present some great points on what it is and some strategies bringing awareness to this issue.

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