Trouble. You can make it. You can stir it. You can find it. You can get in it. You can keep out of it. You can cause it. You can look for it. You can ask for it. You can double it. You can spell it. You can drown it. You can brew it. You can even sing about it...
Coldplay: “I never meant to cause you trouble / and I never meant to do you wrong / and I, well if I ever caused you trouble / O no, I never meant to do you harm.”
Taylor Swift: “I knew you were trouble when you walked in / so shame on me now.”
P!nk: “I'm trouble / Yeah trouble now / I'm trouble ya'll / I disturb my own town / I'm trouble / Yeah trouble now / I'm trouble ya'll / I got trouble in my town.”
Ray LaMontagne: “Trouble been doggin' my soul since the day I was born.”
Leona Lewis: “I'm a whole lot of trouble / We're in a whole lot of trouble / I told you you should never follow me / But here we are, and you're in too deep / I'm a whole lot of trouble / We're in a whole lot of trouble.”
Elvis Presley: “If you're looking for trouble / You came to the right place / If you're looking for trouble / Just look right in my face / I was born standing up / And talking back... ”
Trouble for a cure
What is it about trouble that has enduring appeal? Simple. Much like the retort George Leigh Herbert Mallory gave about why he wanted to climb Mount Everest: “Because it's there.“ For many families, autism is our Mount Everest, and we represent Greek mythology’s Sisyphus. Because our children have been classified with “classic” autism, we must roll that immense boulder (autism) up the mountain (therapies, medicines, insurance, social skills, etc.) every single day, only to watch the boulder roll back down and begin anew the next day. We are the families who want answers. We are the families who want viable treatments. We are the families that want cures. And that’s asking for trouble from many in the Asperger's and High Functioning Autism (HFA) community.
Those in the Asperger's and High Functioning Autism (HFA) community find the idea of treatments and cures reprehensible. They claim a cure is akin to eugenics. They picket and blog about their hatred of Autism Speaks, an organization dedicated to funding research into the causes, prevention, treatments and a cure for autism. “You should love your children the way they are” some say… “People with autism aren’t broken and don’t need to be fixed,” is a common refrain… “We are not defective and can speak for ourselves… ” say those with Asperger's and HFA. And there is my point. Those with Asperger's and HFA can speak for themselves. Not all children with autism have Asperger's and HFA.
Many with autism can’t speak, and never will. They will never work in Silicon Valley, because they can’t even dress themselves. They will never take notes at MIT or Harvard or in any college lecture, because they are too impaired to understand basic language. It is for those with “classic autism” that parents hope.
Parents pray. Prayers search for viable treatments and cures. You say we don’t love our children as they are? On the contrary, we are filled with so much unconditional love for our children that we want them to have the best possible lives that they can.
Why they want a cure
Ask a parent of a child with classic autism about why they want a cure, and they will reply as these parents replied to me:
- I want a cure for autism because until my child can actually verbalize that he wants me to stop his therapies, I won’t.
- I want a cure for autism because it would be glorious to have all my children together on a family vacation.
- I want a cure for autism because autism sucks.
- I want a cure for autism because I want my child to stop living in fear of being rejected.
- I want a cure for autism because I want my child to be appreciated.
- I want a cure for autism because everything suffers: Families, marriages, siblings, relationships.
- I want a cure for autism so my child can have a full life that includes marriage, children and everyday experiential joys.
- I want a cure for autism so my child can make actual choices, and not always have to select the two to three options I think he wants.
- I want a cure for autism so my child can borrow the car keys to take a date out for dinner and a movie.
- I want a cure for autism if only to hear my child say with teenage angst, “Mom, go eff yourself.”
- I want a cure for autism so my child can have a friend.
- I want a cure for autism until my child can articulate that he is happy the way he is.
- I want a cure for autism because people with Asperger['s] and HFA have no right to speak for my child who can’t speak for himself.
- I want a cure for autism, and when one is found, then those who find it unethical or immoral do not have to partake.
- I want a cure for autism because my child is in legitimate physical and mental anguish when he is awake, and his sleep is consistently interrupted.
- I want a cure for autism so my child can eat the typical foods all the other kids eat, without fear of shock or seizure.
- I want a cure for autism so my child can fully engage in the world.
- I want a cure for autism so that my two typical children will not have to be responsible for their sibling.
- I want a cure for autism so my child can tell me if he is hurt or scared or what he wants to do next or what he is thinking about.
- I want a cure for autism so I can die in peace without the worry that he will be unloved and uncared for.
- I want a cure for autism so I don’t have to plan the rest of my child’s life in a group home, care facility or residence.
- I want a cure for autism because just like parents who have a child with cancer, or MS, or diabetes, or a heart defect, it is my job to make their lives as easy as possible.
- I want a cure for autism so my children’s children won’t have autism, and they can live their lives not always surrounded by the none-too-pleasant issues that sometimes accompany autism.
Want to help?
For those who want to help find autism treatments and a cure, please consider a tax-deductible donation to my family’s Autism Speaks “E-TEAM,” in honor of my son Ethan, or in honor of any child.