Thursday, February 10, 2011

Anything you can do.......

I can do better? Probably not but thats what the song says. Maybe it was pure coincidence that I was faced with the, 'I'm better than you' scenario twice in two days or maybe it's my brain needing to rant about it. If anyone ever asked me if I thought I was better than person X my answer would be swift and sure, "Good god, No. Absolutely not, no way, no how!" I'm just not the girl who will ever go cross eyed trying to look down my nose at anyone or anything thing but.......... Everything can be told better in story form, right? 

Yesterday I forced myself to spend a little time at the library. I say forced because I really didn't have any time to spare but the library is my favorite place on Earth and for the last month my visits have consisted of turning in books, picking up holds and leaving. I spent a glorious 30 minutes looking through the section of new books, new audio books and book sale books before heading upstairs to check out traveling books and wander the stacks of fiction not considered "new" anymore. It was bliss, turn your brain off and just let the thoughts flow freely bliss. Then I figured I would take some time behind the computer and update my Goodreads account, look up my favorite authors, etc, etc. If you've been to the Frederick public library (which is BEAUTIFUL!!!!!) you know that at the top of the stairs to the left is Non-Fiction & Reference, to the right is Fiction & Biography, down the middle is table after table of computer terminals. Anyone with a library log-in can use them to surf the web or check out the card catalog. On this day it was bitter cold outside, well below freezing and the computers were almost completely full. I found one in the back next to a man in his flannel jammie bottoms and surrounded by bags seemingly filled with all his worldly possessions.  I smiled, logged in and started going to my favorite book sites. Across the table were 2 other men trying to figure out what time lunch was served. It dawned on me that I was sitting in the library surrounded by men who were either homeless or living at the shelter or halfway house just down the street from the library and they were killing time until they could go stand in line for lunch at the soup kitchen. All at once three things happened, my heart broke, my brain sent a reminder to pick up more food for the food bank and my stomach thought, 'ick, you better remember to wash your hands'. I logged off and went to check out completely disgusted with myself and my gut reaction. Who the heck am I to assume that these men were dirty? There are three mens restrooms in the library, just because they are living at a shelter I assume they are dirty? And does dirt imply that they are lesser human beings? Does living at a shelter make them less worthy? No it does not and I hate my gut reaction in that situation.

To bring it all back around to Autism (to which my whole world revolves it seems), we can consider the differences between Autism and Aspergers.  In the last seven years I have heard many things within the Autism community that has stunned me. I have heard: 
  • Thank God my son only as Aspergers, not Autism.
  • He doesn't have Autism, he has Aspergers.
  • Maggie, of course you wouldn't know what I'm talking about. Your son has Autism, mine has Aspergers.
  • Aspergers is not High Functioning Autism.
Seriously the list could go on and on. Autism is a diagnosis under the umbrella of Autism Spectrum Disorders. Aspergers is also a diagnosis under the umbrella of Autism Spectrum Disorders. They are different, they have different on-set, different characteristics, they are diagnosed differently and at different ages and they have different symptoms. What I don't understand is where one could be considered "better" than the other? Cameron has Autism, is was characterized by regressive speech at 2 years old. Because it was regressive it cannot ever be considered Aspergers. Adam has PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified and also a diagnosis under the umbrella of Autism Spectrum Disorders) which is not regressive and now that he is 6 we can choose to do further testing to have him labeled as Aspergers instead of PDD. I guess I'm wondering, why? It isn't like there is any different treatment or recommendations, it's still a covered diagnosis by insurance, what is the end goal of looking for a new diagnosis? Seriously, I'm asking. If you've got the answer I wanna know! People I've talked with are shocked that I wouldn't want to "go for the Aspergers diagnosis" like it is some form of golden Autism prize like, "if you have to have Autism, Aspergers is the one to have!" Can you hear me shaking my head in incredulity? When did having Aspergers start being better than Autism? I've always felt like the Autism community had a big "we're all in this together" vibe so it really upsets me when I overhear ASD parents saying some of the above things. And lets be clear, it IS the parents saying these things, not the kids.

Anyway, thats my ass-kick and rant for today. I hate my gut reaction when faced with the men at the library yesterday and I'm angry at the hierarchy I've noticed within the ASD community. For the first, I am disappointed in myself that I was even capable of such a reaction when faced with another member of my community. Aside from my genetic make-up I am no different than the man sitting next to me in his jammie bottoms. We breathe, we eat, we love, we cry, we laugh and we dream. His dreams are different than mine, his dreams are no less valid but I'm sure they are far more important. 

For the second, I am disappointed in the community I turn to for comfort. Let me specify that those who believe there is a hierarchy within the diagnosis is small but it is difficult to see past the person in front of you when they say your child is "less" because their child is "more". In talking with some doctors at the Center for Autism and Related Disorders at Kennedy Krieger Institute I have heard whispers that there might be changes coming to the diagnosis coding within the spectrum. I think this is coming for many reasons both for medical as well as insurance purposes (insurances love to deny PDD claims). It sounds as though all the subsets of Autism will soon all be coded as Autism Spectrum Disorders and will all receive the same DSM-IV code (Autism is 299.0, Aspergers is 299.8). I wonder what characteristic of the disability the hierarchy will then focus upon. I'm sure there will always be people who want to boost themselves up by putting others down but I am telling you right now, I will never understand it and I will never accept it. 


  1. Bravo.

    I really wonder about this whole coding thing. Also, I only realized after Grant was diagnosed that those quotes you hear - 1 in 91 children have Autism - don't include PDD and Aspergers...