Autism is like kryptonite to your soul. No matter how much you follow the rules, take your autistic children to therapies, change their diets, take them to the right schools, it is still a jacked up way to spend your life. How do you cope when your son is on the autism spectrum and cannot spontaneously speak, and starts to scream in agony and cannot tell you where he is feeling pain? I often wonder who can stand up to this autism thing. Not me! It's brutal, it’s ugly, and it’s soul-atrophying. And again I ask, what exactly is this thing called autism?
We look it up, we Google it, or we check our traditional Oxford dictionaries. But who among us can define how awful it really is? To see your autist miserable and unable to say, “Mom, I have a pain in my tummy” is one of the worst things I have experienced in my whole life.
I'm tired, and I do not mean tired as in 'sleep overnight and you will be rested' tired. I mean tired in my mind, my heart, my bones. I feel that my autist is doomed. During autism awareness month there are many activities to remind the wider world that we autism types exist. The organisation that I founded organises competitions and arranges exposure for various stakeholders in the "autism sector" to raise awareness about the disorder.
I recently completed my first book. I have dedicated all of the proceeds to my autism and disability foundation. But guess what? MY SON IS STILL SICK! He will be 11 in May. He has been selected to take national exams for capable high school students. Irony of all ironies is that my brilliant kid who will be sitting cheek by jowl with other brilliant high school types can't explain where his pain is. Suffer my little boy to speak unto me. What is this strange plague that is assailing our families? It's a mysterious scourge and its prevalence is growing!
I have two neurotypical sons who are both older than my autistic son. Both are in high school. I am a young woman and I love being a mom. But I am terrified of having a child. That's not fair! In this dark night of the soul, I sit and I worry about the possibility of my sons having autistic children. I wouldn't wish autism on the devil.
I have seen great improvements in my son's condition which have made me happy on sunny days. And I live in the tropics so luckily the sunny days outnumber the rainy ones. But why do each of the rainy days seem as if they last three hundred days at a time?
I hate autism. Because I have chosen to handle my son's condition in the positive, I seem to be giving a false impression that not only am I in love with the disorder, but (in the words of Beenie Man and Angel) I'm having the time of my life. As I dance through my days, a song in my heart. Something akin to Gene Kelly's world famous high street dance number in the film, “Singing in the Rain.” Metaphor anyone? Well, I ain't dancing to the autism tune. But seriously, I get through my days by praying and trying like hell not to give up.
I wonder daily if I will make it. You know, I have a lot of understanding people around me. They ask questions, they help my organisation and they volunteer. Many autistic and disabled people have received help simply because my son has autism. That is pretty tight. When I see this I wonder why my son isn’t cured. What will it take for my boy to walk out of autism? How can I stand before the Goliath of emergency room doctors who do not have a clue how to treat an emergency case with a child with autism? They are the doctors. I am not. So who shall help us? Invariably the ER medics prescribe him some crap and we have to get into the regular doctor’s office as soon as they open. But when will be the day when they can't help his case in the ER and it costs him his life?
Yes, there are people starving in India. And in Jamaica we ask, "Why are you crying coz you don't have no shoes when the other guys don't have no foot?" Well I have the damned foot already and that ain't my fault so gimme the damn shoes.
As I write this my 13-year-old son and I are wishing we had super powers while my son with autism is eating dinner and playing games on the computer. We had a bad day today due to the fact that my autistic son is recovering from a really bad illness (which has nothing to do with autism). His brother and I had a tickle fight in which my autistic son joined and he’s laughing. Even though the day was very bad, the good times are healing somehow.
But what about the next time when he goes through another illness which he suffers because he cannot clearly tell anyone where he is feeling pain? Even as I write this I know that I am not unique. And for me, the whole ‘misery loves company’ adage also sucks because knowing that other people are miserable because of this condition doesn't make me feel one bit better!
Writing helps me get a lot of my unhappiness off my chest. Generally, I would just ask that if you know someone with a disability, whatever it is, please be nice to them. Because it’s more than just the disability -- it’s all that comes with it! Yes, everybody has problems, but proof that we are more than animals is our ability to show empathy towards our fellow men, no matter what their problems are. I have to be honest. I am not sure that I can live with this anymore. But since I don't have a choice, you guys tell me what must I do!
Founder, The Maia Chung Autism and Disabilities Foundation
This is a modified version of an article originally published in April 2011 with the title, "Autism Sucks!" in the Jamaica Observer.
The views expressed in this story are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.