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Saturday, December 30, 2006

What is Autism -- Part 5

What Autism is NOT

Sometimes it helps to express what one does believe, and sometimes it helps to express what one does NOT believe. If you express both together, then you're more likely to be communicating effectively. For autism, I feel it is very important for me to communicate effectively, because the fate of my children is wrapped up in how others perceive autism to be. That is overcomeable, but the difficulties one must overcome when one is autistic -- mainly attaining enough shared context to interact well -- is enough, the battle for acceptance and understanding is extra weight. It is this weight I hope to bear for my children, at least as much as I can.

1) Autism is NOT a disease.

Perhaps that goes without saying, but now I've said it. I've never heard
of anyone excluding an autistic individual because they were "diseased" or
"contagious," which is good, because they're not. I don't want anyone to start either.

2) Autism is NOT a demonic possession.

This, unfortunately, does not go without saying. People believe it, and children die because of it. This isn't the only story I've seen of it, but it is the closest to home. Why people are so ready to believe that their autistic child is possessed by demons, that the demons are the source of their autism? How someone could justify sitting on the chest of a child for two hours, suffocating the child, and calling it God's help "through prayer"...this I do not understand.

I pray for my children all the time: I fold my arms, bow my head, open my heart to the Lord, and fill my head or my lips with the words of my thanksgiving, my supplication, and my praise. I hold my children in my lap while I pray; I hold their hands as they lie in bed as we pray together; I put my hands on their heads while I pray when they're sick; but I never sit on them to pray or use prayer as an attack on their personhood. And, un-Christian though it is, if someone were to call my children demons to my face, I'd have to seriously consider punching them in the snout; I probably wouldn't do it, but I'd have to seriously consider it.

3) Autism is NOT a death sentence.

I do have to amend this one slightly, autism is not a death sentence any more than being human is a death sentence. Autistic people will die, just like the rest of us; however, they won't die faster or more painfully because they are autistic (exceptions for idiot parents who kill their child, or allow others to kill their child...simply because the child is autistic). There is nothing especially fatal about autism. Treating autism like death...I don't get it. I try, I do, because it's so damn common, but I don't get it.

4) Autism is NOT a cage.

Okay, so this one... Parent's sometimes express their own need to rescue their child from autism, to get the child out of autism, that their child is somehow trapped in autism, like a cage. This I understand. I can understand why it seems that way. For a while I even shared this notion of autism trapping the more interactive child beneath its weight, but then I really started seeing my children for who they were. One of the things all four of my boys share is the tendency to laugh out loud at something that seems like nothing. Brandon and Willy are able to articulate the humor they experience, even when they're unable to "share the joke." However, Alex...Alex is the most "profoundly" autistic person in our home, and he is also the most genuinely happy, joyful person I've ever met. Sometimes, it seems very selfish of me to want to help him to learn to interact with this world full of sharp edges, complications, hate and prejudice. Sometimes, however, I feel that if Alex could bring whatever he sees into this world that we can share it, then the world would be so much the better for all of us. Alex is not trapped.

5) Autism is NOT an affliction.

Prague Twin, a friend who's been following me throughout this series, has already reached this conclusion. He's already come to understand this. And I thank him for that most excellent compliment. Autism is a difference, a state of being that we're unfamiliar with, unless we try to understand. But, it's not an affliction. If Alex were afflicted with his "most profound" autism, would he be so happy? If Ben, my baby, was afflicted with autism, would he get so much joy from simply being himself? If Willy was afflicted with autism, would he be so proud of his accomplishments, those that are not despite, but because of his autism? I don't think so. I've seen many autistic children. I've seen videos of autistic children. They all have the "temper tantrum" moments. But, you know what? So do "normal" children. My ten-year old, "normal" step-son still throws the occasional temper tantrum. He also experiences joy and happiness. Autism doesn't afflict, but the prejudiced attitude with which some would treat autistic individuals does.

6) Autism is NOT curable.

And that's what it comes down to. Autism is a state of being, part of the person, and thus incurable. Would you cure someone of blackness? Would you cure someone of blue eyes? Would you cure someone of being more math smart than word smart? Would you cure someone of being athletic? Would you cure someone of being clumsy? Or of being a "nerd?"

Or, better yet, to use David's example, would you spend hours and hours each day to cure someone of their blindness? Or, would you spend those hours teaching them how to cope with their blindness, and interact with the world despite their blindness, and through their blindness? I choose the latter. I would rather help my children be who they are and interact with the world, then to change who they are so they are somehow more "worthy" to interact with the world.

Now, think back for a moment to the diagnostic criteria (DSM-IV) that I shared with you. You will find a list of traits, with a need for at least some of them to be found to be autistic. They don't know why, or how these traits come about, they simply know an individual is autistic because those traits are there. It reminds me of "flu-like symptoms." Flu-like symptoms means you're sick, right? So many illnesses and medical conditions involve "flu-like symptoms." And yet, the most memorable time I had "flu-like symptoms" was two weeks after my wedding. I felt terrible. I was sick to my stomach, throwing up, achy and tired.

I was pregnant!

From those flu-like symptoms, I gave birth to a wonderful son I named Willy...and my life will never be the same, and I will never, never, never regret it.

Tomorrow I will post the final segment of my series, What is Autism -- Part 6, Why Neurodiversity.


At 12/30/2006 6:38 PM, Blogger mcewen said...

1. So if I rent that old movie 'Rainman' I won't understand autism?

2. You mean your kids are cool like him with special talents?

Cheers dears

At 12/30/2006 6:57 PM, Blogger MileMasterSarah said...

Thank you for this. With my son, before diagnosis and now, I've always said that the things that cause him the most problems NOW will be the gifts that truly set him apart later. Because of this I would hate to take his energy, joy, love, and passion away. His energy, joy, love and passion can cause problems because he is so consumed by them, but I would never take them away. I don't want to cure the parts of him that are his blessings. I just want to make it easier for him NOW so he can recognize his blessings LATER.

At 12/31/2006 4:12 AM, Blogger David Schantz said...

I got behind because of some family illnesses. Everyone is doing better now thanks to their doctors and prayers. Not the kind of prayers you mention in "People believe it, and children die because of it." The old me would have liked to spend a little private time with the people that were involved in this young boys murder. I'm glad the old me doesn't get out much any more. You said,"I would rather help my children be who they are and interact with the world,",your helping them to learn and grow. At the same time they are teaching you more about Autism. I hope there will be a second series at a later date.

God Bless America, God Save The Republic.

At 12/31/2006 4:33 AM, Blogger Stephanie said...


1) I really doubt it. Perhaps it is accurate for autism of the past, but now with the treatments we have available (sometimes for a steep price) and the communicative autistic adults who are willing and able to help us better understand autism... I would not use "Rainman" as a guide as to what to expect from our children.

But, then, I think that's a rhetorical question. (I'm never very good at picking those out.)

2) My kids are incredibly cool, and incredibly special...but not like him.

Special talents:
Willy can recite entire feature-length movies word for word, and initially he even used such movies to express himself when he was just starting to get verbal. Two favorites that I well remember is "As you wish," to indicate "Okay, I'll do that" (from "Princess Bride") and "You shall not pass!" to indicate "Stop, pay attention to me."

Alex is great with puzzles. His old favorites that are now way too easy for him -- those he can put together backwards, with just the cardboard for a visual. His spatial awareness astounds me -- probably because I couldn't draw a truly straight line (with a ruler) to save my life.

Ben is still young, only four, so right now his amazing skill is to play Houdini with his clothes, no matter seemingly impossible they are to get on they come off really easy, and to climb improbable locations without injury. Like scaling the kitchen cabinets to access the cereal in the middle of the night in the dark, or opening the back windows (first floor) and scaling down the backyard several feet below (at least five) -- all without a bump, bruise or scratch.

So, not like Rainman, but I think it makes them spectacularly special!

At 12/31/2006 4:36 AM, Blogger Stephanie said...


"I just want to make it easier for him NOW so he can recognize his blessings LATER."

I'm totally with you on that one. That to me seems to be what parenting is about, irregardless of what special needs the child has. And I've seen enough "normal" children to believe we all have special, unique needs that parents should be mindful of as we go about our parenting.

At 12/31/2006 4:39 AM, Blogger Stephanie said...


I'm glad your family is doing better. My throat problem is still lingering, and playing with my ear and my lymphnodes, but overall it's healing...and I never did make it to the doctor.

"I hope there will be a second series at a later date."

I'm already considering a second, neurodiversity-specific series for the near future. But, whether or not that reaches fruition, I will definitely try to keep sharing what I learn, because I really do believe there's something for us all in this.


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