Everyday autism advocates

DR RADICA MAHASE

I ended up on this autism advocacy journey because of one special little boy, my nephew Rahul. I remember the day that my sister brought him home from the hospital and she handed me this beautiful little baby boy. Since then, he has been a big part of my life, making it brighter even on the most challenging days. He has taught me to love unconditionally and to put someone else’s needs before my own.

Rahul inspired me to advocate for change in our society and to change our world, because I always knew that he deserves to live in a better Trinidad and Tobago. I never planned on becoming an autism advocate. I never planned on becoming an advocate for anything. All my life, I always believed that an advocate was someone like the people I read about in my history books – formidable, fearless, strong leaders, inspiring entire societies to change their ways of thinking; individuals who created positive impact on such a large scale that the whole world would sit back and listen.

Then I sort of casually fell into the role of autism advocate. It wasn’t deliberate, it wasn’t planned and it certainly wasn’t well-thought-out. For when you have a child with special needs in your life, when you love that child so much that you would do anything in your power to help that child, to make that child happy, then nothing is really well-thought-out. Everything simply becomes something that you step into, something that you will do whether impetuously or by force; just to make that special person’s life a better one.

And that’s when I realised that advocates are normal people – parents and grandparents, aunts and uncles and brothers and sisters – just normal, average people who want a better life for the person they love. Their fight is real, it is on a daily basis and it’s against every and anyone who is preventing their loved ones from living a fulfilling life.

In the last seven years, I have met hundreds of autism advocates right here in TT. They are parents and caregivers, brothers and sisters, grandparents and aunts and uncles. They are the ones who fight against poorly-organised government structures; the ones who have to run down principals to get their children enrolled in schools; the one who have to educate the teachers so that they will understand and work with the child. They are also the ones who have to stand up to therapists who only see them as bank accounts.

They advocate for their children every day in different ways. They are the ones who stand up for their children in a society that only sees their children as "behaving badly" or as a "duncy head." They are the ones who take their children out in public despite the stares and who, by doing this, say to the world, “This is my child. I love and accept him, autism and all.” These everyday advocates are the one who have to correct people who think that their children "should be locked away home" or educate those who think that their children "is a burden to the country." Sometimes they have to fight right there within their homes, with relatives who don’t understand the child, and who believe that "you can beat the autism out of someone."

They are the real heroes, fighting every day to make their children comfortable and happy and to give them the tools they need to survive in a world that judges and condemns them.

And when you live in a country where no governments have placed any real emphasis on autism and special needs, and opportunities are lacking immensely, then you will really appreciate the work of these normal, everyday autism advocates.

If you really want to understand autism, talk to a parent/caregiver or a sibling who sacrifices so much for his/her brother or sister. Even the family that has the financial resources and can afford private schools, therapists, etc, still has to deal with the sensory over-stimulations and meltdowns.

This autism journey is a learning experience. No matter how much you can afford and what you can provide, you have to figure out ways to deal with whatever might come up. You are constantly trying to make things better for your child. And as long as opportunities and services continue to be non-existence at a national level, the advocacy will continue.

So, as we focus on autism awareness throughout April, kudos to all the autism advocates who continue to shine their lights every single day, despite the bumps and big holes on the road that they walk daily.

Keep advocating, keep working towards making TT a better place for your child and remember, “All the darkness in the world cannot extinguish the light of a single candle.” (Francis of Assisi).

Dr Radica Mahase is the founder/director of Support Autism T&T