Child with autism in therapy

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...

Trouble for a cure

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.

Boy with autism

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

Child with autism with his grandma

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.

More about autism

Autism rocks the house
An ode to the birthday girl through the eyes of autism
Autism: You gotta be in it to win it

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Comments

Comments on "Autism: Kiss my Asperger's"

shelley July 03, 2013 | 9:15 AM

er........just to point out to you guys (don't flame me down).......i have PDD-NOS and i have achieved a lot so far, in spite of the special needs unit saying i won't cope with GCSE's, which meant I had to work my way up in college before now, before i had the qualifications to progress to university and i don't want to be patronised or said I'm anything less by anyone who thinks the the world should be full of perfect, pre- programmed robot- people! if the world was full of physically and mentally perfect peoplw, to me that would be a stepford dystopia! and besides, i belive that some people with HFA are fantastic! for example Dan Akyroyd is an aspie, and he is a very famous actor, likewise Satoshi Tajiri was said to have aspergers, and without him, there would be no pokemon!personally, i think people with ANY learning disabilities are much better friends than NT people who would probably be petty, backstabbing drama queens!

Allison March 25, 2013 | 11:12 AM

Ann, Never would I refer to anyone with autism as being defective. That is not a word that has ever crossed my mind, nor something I would call any human being. Please don't ascribe that word to me. Would you call someone with cancer defective because they search for a cure for cancer? Would you call someone defective because they want to find a cure for diabetes? I wouldn't. I would say they want a cure to make their lives as full as possible. Because I want a cure does not mean that my son is any less a person. What a horrible thing for you to say or even think. Autism Speaks DOES speak for me, and for my son. The organization has done so much good for my family and me. If you feel differently, that is your prerogative.

ann March 13, 2013 | 11:49 AM

yes but YOU and other autism parents and autism speaks is trying to speak for EVERYONE who has autism. The do not refer to it as LFA but autism. Stop searching for a cure for autism and search for a cure for LFA then. Speaking for anyone who is able to communicate is wrong. I don't really care about the parents I care about the person with autism. WHY are you searching for a cure? To help YOU? And what if they never find a cure? Is your kid "defective" until then? Autism speaks have NO RIGHT to speak for me OR your son. I am high functioning i guess though I have no friends and I can't work or study because I am unstabile. I would like to be magically cured, but I refuse to be seen as less than a human. If you tell us that we do not speak for your son, then why not tell autism speaks to change their name to parents og LFA speak.

Allison Walmark March 05, 2013 | 4:18 AM

Kate, By definition, a cure means: Verb: Relieve (a person or animal) of the symptoms of a disease or condition: "he was cured of the disease". Noun: A substance or treatment that cures a disease or condition My point is not to degrade those Aspergers, it is to merely point out that those with Aspergers don't have a right to speak for my child. There are those children who are not at all high-functioning and can't advocate for themselves. If my son was to one day have Aspergers, I would be very happy to know that at least he has the opportunity to live a more fulfilled, aware life.

Kate Gladstone March 04, 2013 | 6:41 PM

Hat would happen if a cure existed — and the cure removed every problem on your list — and then, with the problems gone, your child was still autistic? (In other words: what if the result of curing the bad parts of autism is that's the person who's left is a person with Asperger's?) Would that be all right with you?

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