We need to find meaningful ways to help families directly affected by autism in Trinidad.
I wonder: How exactly having blue balloons being thrown in the air, a few nice words spoken here and there, lighting up all our buildings blue (Not the colors of Autism by the way but of a controversial organization called Autism Speaks) help our local autistic families directly?
Yes, the lady that has to carry her autistic adult child on her back and climb a set of stairs up on a hill every day? How does it bring any relief to the mother of an autistic child who bites her mother during a meltdown and the scars are visible for everyone to see? In what way is it helping them?
This campaign has become a fashionable trend worldwide to support a foreign organization (Autism Speaks) that spends less than 4% of their budget in helping autistic families rather than actually understanding that the real people that need help here are not being benefited directly.
Unfortunately, autism and related services worldwide has become a big business. Now, don’t get me wrong. I am not saying they should provide all these services free of charge; of course they have to make a living but when you are providing a very expensive service for autistic children and yet your staff is not properly qualified to cater for them, it is completely unacceptable.
Autism is not a celebration or a business. It shouldn’t be. What we do celebrate are the small and big achievements of each one of our children because we work so hard to help them achieve them and yet, they have many difficult and heartbreaking challenges. We are not superheroes; we are just humans performing a formidable task.
Raising three children on the spectrum is not a walk in the park, my husband and I wake up seeing autism; thinking about autism, talking about autism and trying to find ways to help our boys. We breathe autism. Autism Awareness Day is a daily event at our home.
For most families affected by Autism locally, year after year their children are not receiving 20 to 40 hours a week of free public therapy neither accessing free public schools. Where is the government responsibility and involvement in all this?
Do you wish to bring awareness? I think it’s great. Study and research about autism. Ask an autism family what is like to raise a child with autism, engage a child on the spectrum and observe what is like, become a friend! Ask a family what they need (I have serious doubts that they will ask you to turn your house blue) and if you really mean it: Take action! Do something to help them directly and trust me, they will be forever grateful.
Talk to the people dealing with these issues directly in ground zero. It is war out here and turning everything blue does nothing to help fight the battle.
Thank you~! You perfectly described the struggles of many families in Trinidad trying to access services for their children! I am a single mom and is very hard. I support awareness but I don’t support the fact that is not helping us.
I found your blog through twitter and I totally get you. People all over the world are using autism for their own benefit and raising money for an organization instead of helping our kids. It looks like things in Trinidad are worse than they’re here in the US.
My sister lives in Chaguanas and doesn’t have a car, my nephew doesn’t talk and is very aggressive I don’t understand why all of the sudden we have more and more autism groups and all they want to do is go to parties, take pictures and talks, have interviews while people like my sister and nephew suffer. 🙁
Update: I made a few edits to this post so that offended parties will focus on the meat of the topic and not be sidetracked into believing that I am targeting specific people or services.
The focus is on the people who live autism, the autism parents and their children.