Sunday, January 4, 2009

Autism: Who are you?

I have two young children with Autism, ages 8 and 4 years old. Needless to say, life is pretty interesting around here most days. My husband and I have begun to settle into the life of Autism, as much as settling is possible, I suppose. It has been a difficult journey and I am well aware we are only beginning. Like many fellow parents of children with Autism, I have read nearly every book on the subject, been to every seminar, and tried every treatment. We often surprise ourselves with the things we are willing to try in an effort to eradicate this inexplicable monster, Autism. Many statistics today now say that 1 in every 150 children being born will develop Autism. This is clearly an epidemic we're facing and I am sick of it!!! Autism, who are you and what do you want?!

While at the bookstore the other day, I made my usual perusal through the section on developmental disorders. I always like to see if there are any new "cures" being touted or if there are any new social stories that might appeal to my 8 year-old, who loves being taught how to better navigate the social arena. I cannot fathom what life must be like for parents who never have to go through that particular aisle of the bookstore and gaze with pity and horror on us parents who stand in that section for hours. I am not ashamed to admit, I often feel very jealous of parents of "typically-developing" children. The books were well-stocked on this fine day until I came to the shelf on Autism. The books were sparse in this section and I thought to myself, "Another happy hopeful parent has been given the news, 'Your child has Autism.' " This parent then made a quick trek to Barnes and Noble to get better acquainted with the monster. Even as our children grow older, I believe the desire remains for many of us to see this mysterious disorder resolved and understood. I began to feel very angry, not just for my own children, but for all the children that very day whose parents were sifting desperately through the many books.

Later that afternoon, I had a co-worker approach me. She explained that she had been babysitting for a 2 year-old boy and was beginning to have concerns about his development. Given my experience with Autism, it is not uncommon for friends, parents, or teachers to ask me about the disorder. She began to rattle off a list of concerns that sounded like classic Autism. Some of these early indicators would be apparent around age 2 0r 3 and include: failure to begin speaking or significantly delayed speech, resistance to eye contact, often does not respond when name is called, tends to line up or stack toys repetitively, issues with food or clothing texture, hyperactivity or extreme lethargy, resistant to social contact, and fascination with small parts of toys rather than the true function of the toy. The child my co-worker discussed had nearly all of these early signs. I confirmed her suspicion and we discussed the best approaches to having a parent get their child assessed. This is a touchy subject for us parents, and we tend to not take kindly to friends and/or family gently telling us something seems out of sorts with our babies. After this conversation, I was reminded of some of my own early grief and anger. It began to resurface and I wished that Autism was standing in the room with me so I could stomp it ferociously into the ground.

Just a few days after that incident I volunteered at my daughter's school as a chaperon for their Christmas party. I was chatting with another mother and discovered that she too has a younger son with Autism. She expressed to me, "I know Autism is a horrible thing, but I really love my son just the way he is, quirks and all. I wouldn't change a thing about him even if I had the chance." I've heard other parents of children with Autism express this same sentiment and I smile and hold my tongue. I, too, love my children just as they are. They are intelligent and funny. They have oddities that are endearing. They are blossoming in school and amazing us everyday with the things they learn and accomplish. My husband and I anticipate great progress for our children. Nonetheless, if I were ever given the chance to have Autism removed from our lives, I would do it and not think twice. I hate Autism. I hate it intensely. It is a monster, a terrifying puzzle, and a kidnapper of children's lives. I have a fantasy that brings me peace and always puts a smile on my face-- I know that one day my children will have glorified bodies in heaven, where there will be no Autism. I truly believe this and I pray at night to God that He will not deny me the joy of watching the demon named Autism burn eternally in hell.

Autism, if I could speak directly to you, I would like to tell you this, "We have yet to understand you, and likely you are feeling very smug at your ability to destroy many lives. You can take my children's speech and their God-given understanding of human interaction. You can hold them back and pour on the anxiety, but you can never extinguish the unique spirit of the child. You can take no child that is loved. There are sparks within my children you have never touched and never will. I don't understand you, but I trust my God to deal with you... and your day is coming."


  1. Thank you so much, Jenny. What a great reward to watch Autism go up in flames.... :-)