He runs to make his mind still, to organize himself and to get rid of the noise from this loud, confusing world. The more he's moved, the more he's introduced patterns and rhythm into his routine. Laps around the house are a daily ritual. He's made it more complex as he's developed, but the basics are the same. There is a pattern of movement -- specific foot patterns based on whatever song or chant he chooses to accompany the run, and he can not be stopped until he is ready to be.

This is James, and this is our story.

Wednesday, July 13, 2011

"He Just Looked at Me. He Doesn't have Autism"

We went to see a new pharmacologist to talk about medicine for my son's anxiety. I went through the usual 5 minute intro about our journey with PDD-NOS, anxiety and sensory processing disorder.

The doctor was nice and seemed understanding, but then he said it.

"He just looked at me. He doesn't have Autism".

I think I stammered. I told him I feel blessed that my son is high functioning and tries so hard to make connections with others.  I told him what we've worked on, and how far he's come, and then the challenges he (and we) still face. I thought he understood, but I left feeling uneasy that a neuro-psychologist just casually "undiagnosed" my son minutes after listening to me while watching him out of the corner of his eye.

A month later, we went back for the follow up.  The doctor looked at James, just a few minutes in the room but totally focused on putting together a magnetic game, asking the same questions over and over, and showing an uncanny memory at the placement of random objects in the Dr's office.

Then the doctor looked at me.

"You know what Autism is right?  It is lack of reciprocity.  DO YOU KNOW WHAT THAT MEANS?"

I winced.  It felt like he was yelling at me.

And then the bombshell:

"Are you really attached to that particular label?"

I think I said something like "you can call him a purple people-eater if you want, as long as he gets access to the services that are helping him so much", but I really can't remember because I was too busy screaming inside. 

Screaming at the doctor for not seeing what breaks my heart on a daily basis, but mostly screaming at myself for not standing up to him, and for allowing a person, after 10 minutes, to make me second guess myself and everything I've done to try and help my child.

Instead of slinking out of there feeling sick and guilty, like I just discovered I was either a Munchausen by proxy patient on an episode of "House" or the direct target of Denis Leary's next book, I wish I stayed in that office and said this:

REALLY? Do you think I actually want my son to be labeled with autism? Do you think it makes me happy to watch him struggle daily to fit in? To see how uncomfortable other children are around him when he tries to play with them?  To watch adults get frustrated when he gets in their face and asks them the same question over and over again even though they've answered it?  To have to repeatedly tell him to look at whoever is talking to him, or to continually tell him to answer whatever question has been asked of him?

Do you think I wanted him to realize at the age 8 that he is always going to be "different" from his brother and other kids his age?  To know things that are so easy for his little brother to do will always be challenging for him?  Playing sports, playing with friends, even telling jokes?
Do you think I dismiss the fact that he laughs when other people cry, or that he doesn't understand when people become annoyed with him, or are teasing him?
Oh, actually, yes.  After living this for just about all of the past 8 years, I guess I am "attached to this particular label".

I am attached to it because my son does exhibit that characteristic about reciprocity.   For my son, and many others with ASD,  lack of reciprocity is not for lack of trying.  Although some may try desperately, they are unable to reciprocate without constant assistance and significant effort.  Some of them, like my son, are able to achieve a basic level of back and forth, but they have to work constantly to recreate even a simplistic version what you and I do without even a second thought. 

I am attached to this label because it is a word that has meaning for people who are just getting to know my son, so that they can better communicate with him, and understand the support he needs to successfully reciprocate. 

I am also attached to it because I think it is going to be a very powerful word for my son as he grows, and I believe that he will be able to use the label on his own terms -- as a crutch if necessary when he feels like he is left out or lost, but hopefully more often to help develop relationships that are comfortable for him, with people who will understand and respect him.

As for me personally, I am attached to it because I can use it as a tool to teach others that people cannot be pigeonholed into a 3 word definition in order to understand them, nor can they be "figured out" by observation, and that anyone who tries to do so is lacking in empathy, respect and, yes, reciprocity.


Martianne said...

This piece strikes me since our neuropysch told me that our son exhibits almost all the same signs and symptoms as kids on the spectrum but is too manipulative and communcitive, and, therefore, is not on the spectrum. He did, however, give him an ADHD dx, which gets us the services we need. Luckily, my son is very high functioning...

I love your statement, As for me personally, I am attached to it because I can use it as a tool to teach others that people cannot be pigeonholed into a 3 word definition in order to understand them, nor can they be "figured out" by observation, and that anyone who tries to do so is lacking in empathy, respect and, yes, reciprocity. "

krismac said...

I'm so sorry that I didn't see your comment before now. Thank you so much for reading this and sharing your story. Your son sounds very similar to James, they keep saying he is "complex". I'm glad you were able to get your son the services he needs - that is the bottom line, eventhough it is painful to have to teach the very people we go to for help.