Anosognosia (I’m done denying it…)‏

It has been an emotional week. My wife attended my oldest son’s IEP (Individualized Education Plan) meeting this week and received a shocking revelation – our son may have Asperger’s Syndrome. At least that is what the teachers seem to suspect. Last year, during his final IEP in the Eclipse preschool program (he has had assistance for speech/behavioral problems for some time that were thankfully caught in a local early intervention program thanks to my wife), a different teacher said the same thing.

 

Last year, it made me defensive. I argued there’s nothing wrong with my son. He’s a normal boy. He’s just like I was.

 

But here’s the thing I did not want to admit at the time but am starting to accept – I’m not normal…

 

Sure I’ve heard the “Weirdo” label for a long time – since early childhood — and it has become something about myself I celebrate as I’ve grown older. Gonzo was always my favorite Muppet, after all. But to learn that there may be something tangible that is  physically/mentally/emotionally different. That was something I was not ready to accept. Especially when one considers that Asperger’s is a form of high functioning autism and the undeserved societal stigma associated with autism. There’s no way I’m autistic, I thought to myself. But now that I’ve delved head-long into researching the topic excessively, I think I was wrong.

 

Now here I am, a year later, after first denying my son’s probable prognosis, throwing it up to “boys will be boys” (while having my own boyhood as the only reference point with which to gauge), but now I have seen the marked difference in how my son interacts socially with kids his age, have seen how other kids sometimes make fun of him and he does not realize they are being mean, have seen him struggle and grow violent beyond his own (or anyone else’s) control if his little “rituals” become disrupted like a scene out of Rainman, and I have had to reassess my stance.  

 

I have learned that Asperger’s is thought to be inherited, and usually a direct link from the father is found. Having told my mother, she read up on it and thought it explained so much about my own boyhood. She said it possibly explained a lot about her own father (a famous dentist who revolutionized the field, very focused on the details of the mouth and teeth, but apparently with his own unique quirks).

 

My mother said she always knew something was wrong with me. I would have tantrums for no reason at dinner time, not allowing anyone else to eat. I would look possessed and no amount of discipline or spanking was going to change me if my little rituals were not kept. I suffered insomnia and would not let anyone else sleep in the house until I after I fell asleep, and was a nightly terror for my sisters and my parents. My parents had to drag me to school while kicking, screaming, scratching, biting, and seemingly demon-possessed due to my discomfort of leaving my home and comfort zone. I was dragged to psychologists, my mom hoping to figure out what was wrong while being constantly criticized by family and friends for perceived poor parenting skills (which was not the case at all). When in my own world as a child, my family would always shrug off my eccentricities and say “that’s just T.J. being T.J.” It’s funny how my family said the same thing about my son and his quirks. My mother read the criteria and called me up, very emotional, professing she was relieved. It was not her fault. I must admit I feel some of that same relief about my son’s behavioral ticks, knowing they are not my fault. She said she recognized the syndrome immediately and that it described me as a child perfectly.  She just wished she had known about this condition when I was a child.

 

I’ve always known in the back of my mind that there was something different about me. It’s a remarkable coincidence that I spent so much time while earning my education degree studying psychology and special needs. When working with special needs’ kids, I could often see a reflection of my younger self, especially in those who suffered autism. I could identify with them more than I wanted to admit at times. Now, I’m starting to understand why.

 

My parents and sisters have seen many of the same traits, quirks and eccentricities I displayed as a child in my son. I noticed them, but now that I know what they are (or at least seem to be), and as sad as it makes me, I’m also relieved and grateful to live in a time where these things can be diagnosed and have a school system — in addition to friends and family — with resources to help us cope as we travel on this journey with our son. Accepting my difference, I am thankful for it. At least I can look my son in the eye and tell him “It will be okay. I’ve been there." It’s tough to spend so much of your life feeling ostracized. But as we grow older, mature, and learn our own triggers, we can control ourselves and learn to live productive lives. As a man, I feel okay in my own skin – in fact I really like being me.

 

I have a lot more to say about this…It’s not officially diagnosed for either of us, but the more I read, the more Aspergers seems to fit. Look for more posts about this in the future. I intend future posts about how other adults/parents perceive parents and children with Aspergers and the dangers of commonly accepted (wrongly encouraged) forms of discipline. I will talk openly about the diagnostic process and suggested treatments.

 

I am making the decision that silence on a subject like this is not the way to go. It’s better to be open. I don’t know, maybe someone out there can find inspiration here?  

 

Asperger’s Syndrome reference/fact for the day (definition from the DSM-IV): http://myweb.lmu.edu/jdevine/AS/DSM4.html.