AUTISM sucks. It’s like kryptonite to your soul. No matter how much you follow the rules, take them (children) to therapies, change their diets, take them to the right schools, it’s 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? It’s the time I come closest, I think, to feeling how Jesus must have felt about us, when He decided to take the cross and bear our sins.
When you love somebody you want to take their cross, you want to bear their pain, but unfortunately we are not all as lucky as Jesus, sometimes we cannot be crucified for those we love unconditionally, even when we want to be. That is the truth of autism.
I often think, who can stand up to this autism thing? Not me! It’s brutal, i’s ugly and it bleeds the soul. And again, I ask, what exactly is it? This 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.
I’m tired, and I do not mean tired in the ‘sleep overnight and you will be rested’ tired. I mean tired in my mind, my heart, my bones. I feel my autist is doomed. During Autism Month (April) there are many activities to remind the wider world that we ‘autism types’ exist. The organisation I founded organises competitions and arranges exposure for various stakeholders in the autism sector in order to raise awareness about the disorder. I recently completed my first book and I have dedicated all 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 do national exams for the high school capable students. Irony of all ironies, my brilliant kid who will be sitting with other brilliant high school types, can’t explain where the pain is. Suffer my little boy to speak unto me.
What the hell is this strange plague that is assailing our families? It’s a mysterious scourge and its prevalence is growing. I have two neuro-typical 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 are more than the rainy ones. But why do the rainy days seem as if they last each one, 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 D’Angel, I’m having the time of my life. Well I ain’t dancing to the autism tune. I get through my days by praying and trying like hell not to give up. I wonder daily, will I make it?
I have a lot of understanding people around me. They ask questions, they help my organisation and they volunteer and many autistic and disabled people have received help, simply because my son has autism. That is pretty tight. So when I see this I wonder, so why isn’t my son cured? What will it take for my boy to walk out of autism? How can I stand before the Goliath of emergency room doctors, doctors no less who do not have a clue how to treat an emergency case with a child with autism?
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 game on the computer. We had a bad day today, because he is recovering from a really bad illness (nothing to do with autism). He’s laughing and his brother and I had a tickle fight, in which my autistic son joined, and even though that day was very bad, the good times are very 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 I am not unique. And for me, the whole misery loves company adage also sucks ’cause me knowing that other people are miserable because of this doesn’t make me feel one bit better!
Writing helps me get a lot of my unhappiness off my chest and 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 give empathy for our fellow men, no matter what their problem is.
Maia Chung is founder of the Maia Chung Autism and Disabilities Foundation.