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Saturday, April 16, 2011

Autism and My Family

Autism.  My brother was diagnosed with Asperger's Syndrome when he was 4 years old.  I was nine.  My first question was whether or not he was going to die, followed by "is it contagious?"  Although I believe it is safe to say that these fears were dispelled rather quickly, the rest remains as much of a mystery today as it was 20 years ago.  I feel compelled to write only of subjects with which I am familiar, things that I can honestly say I have experienced.  Unfortunately, autism is something I know all too well.

It seems to be sort of a buzz word now.  Something like 1 in 150 children are diagnosed every day. (Don't quote me on that, I became bored with autism statistics a long time ago.)  But, in 1991, autism described only one person as far as I was concerned, my brother Jacob.  I think it was the fact that the discipline my parents had used on my sister and myself wasn't working with him.  The same rules didn't seem to apply to him, and they sort of ran out of  "solutions."  I remember staying with a family member while Mom and Dad took Jacob to Springfield to get tested.  Even as a nine-year-old, I remember noticing the strain on my parent's faces when they returned home.

I can only provide a sibling's point of view, and I would never even pretend to know what it's like to have my own child receive such a diagnosis.  My limited perspective is probably unique to only my family, because the only true statement I've ever heard in relation to this disorder is, "If you know one child with autism, you know one child with autism."  No two are alike, and many are so completely different, it's a wonder that their diagnoses fall under the same catergory.  But, I can at least share what autism meant for me and my family.

-Early on it meant trying every remedy available at the time.  Our entire family went on the glutein-free, sugar-free, basically taste-free diets.  I remember my sister and I walking to a friend's house with snickers bars hidden under our shirts.  Mom had smuggled a couple of sweets to us every now and then because I think she felt bad that we had to be on the diet too.  She just didn't want Jacob seeing us eat edible food, when he had to eat, what was essentially cardboard, all of the time. 

-When I was six or seven, it meant sitting quietly in the backseat of the car while my brother was pinching, hitting, pulling my hair, and even sometimes biting me.  While many "normal" siblings take that opportunity to wail and scream and beat the crap out of each other, I knew, even then, when my mom just needed a break.  So instead of telling on him, my sister and I would simply take what he gave us, sometimes unable to keep from shedding some silent tears.  However, don't misunderstand what I'm saying, we had our not-so-angelic moments as well.  We did all the rotten things big sisters do to little brothers.  We just had to put a different twist on ornery.

-As we got a little older, autism meant recognizing "the look" in public places.  We knew people were staring when he threw his temper-tantrums, and it took awhile for us to simply ignore them and keep walking.

-It meant hearing hurtful things from other, less-informed people. I even had a classmate say something like, "at least my brother isn't retarded."  Those words stung more than any I'd ever heard before or since.  I didn't know it at the time, but that moment was one of those defining moments we have in life.  I have come to realize that although we have to deal with a lot of hurt, and a lot of negative experiences associated with autism, this happens to be one of the positives.  I know that because of my experiences with my brother, that I am incapable of saying something so hurtful to someone else. That's one less hurt from one less person in the world, and that is not a bad thing.

-Each time my sister or I became pregnant, it meant "knowing" that if we had a boy, he would be autistic.  We weren't negative about it.  I can't even say we were sad about it.  It's just all we knew.  Of course we'd seen friends with brothers who were "normal,"  but we just didn't consider that a possibility for ourselves.  And after each child is born, we watch their developmental milestones very carefully.  Even on a subconscious level, I think we are always assuming our children are autistic and with every reached milestone, the thought backs away a little more until we decide that they aren't. 

-As an adult it means being cheated out of that mature brother/sister comraderie that many people take for granted.  My sister and I are EXTREMELY close, probably in part due to the fact that we share this connection to autism.  But we feel like we are missing out on the ability to go to our brother for advice on things that are going on in our lives.  Our children don't have the traditional uncle.  What they have is more of a peer relationship, and even that only lasts for a short time because they learn rather quickly that in certain areas of life, they have already passed him by.  However, our children are slow to judge and quick to defend those who struggle.  They are compassionate and patient, and although we'd like to take the credit, Callie and I know that some things are just learned on your own.

For me, autism is so much more than puzzle-piece bumper stickers, and a reason to wear blue.  It has shaped the person I am today.  It has made me laugh, and cry. It has pissed me off, and embarrassed me.  It has made me grateful, and made me feel cheated.  I hate it for what it has done to my brother.  I hate it for the life it robbed from us.  But, I am thankful for my experiences.  I am grateful to my parents for somehow struggling through one of the most challenging obstacles in life, and for helping my sister and I to not only accept, but to embrace the life we were given.  Now that I think of it, maybe autism is a little contagious.


  1. I'm crying...I'm just crying. Every word is perfect, exactly what I would have said if I had been given the gift of words. Thank you.

  2. Your parents really are amazing, your whole family is amazing.