Wednesday, May 9, 2012

"No it Doesn't"

I was feeling rather discouraged on the drive yesterday from Phoenix to Tucson. I was thinking about everything that I said in yesterday's post, but then a song that was playing in the car sprung a line of memories that reminded me why I do what I do and is a fitting thing to write about in this my 599th post.

This event goes all the way back to 1st grade and music class. Music class was always confusing for me, such as the time we listened to the Surprise Symphony and the rest of class gave very exaggerated response to the "surprise" in the symphony. However, that was just a mild thing compared to what happened later in the year.

We were listening, well, I'm not certain as to what was playing, but the teacher had plugged in the very large speakers and the vibrations from the bass was immense. I do remember that on this day my music teacher had a terrible cold and her voice was very quiet. Anyway, as soon as the music started I felt the shaking all throughout my body as well as the vibrations in the floor. This wasn't just an odd feeling, but it hurt. I raised my hand and said, "I feel the floor shaking!"
She responded, "Yes, it's called bass."
I responded with, "It hurts."
And she responded with something that I think shaped me. Yes, in my presentations I say that in 2nd grade, when I learned the pattern of the fire drills, I was afraid to speak up. Could it have been from this experience in 1st grade? Perhaps and it all could have started with her response of, "No it doesn't."

I've heard from many parents along my nationwide journey on fears of when, if ever, to tell their child they have Asperger Syndrome. I think this story puts a lot of merit in the "tell" side because by my 1st grade teacher telling me that what I was feeling wasn't there I was essentially being told either A. I need to "toughen up" or B. I was making up these sensations. In either event what is the logical course of action? For me it was to quit speaking up because if no one knew how I felt then how could I ever be told that what I was feeling was false?

I think back to that year, it was the 1989-1990 school year, and how far the world has come in understanding. Back then Asperger Syndrome wasn't even a diagnosis so I don't think we can fault my music teacher, I know I don't, because the level of awareness just simply wasn't there. However, even though I don't fault her the ramifications from being told that what I was feeling was "wrong" so to speak left a long lasting fear of speaking about how I felt. Now, let's say I was in 1st grade now, and let's say I was already diagnosed, if this were the case and I spoke up there's a good chance that, with the ever-increasing awareness of the autism spectrum, there wouldn't be this denial of feelings but rather, hopefully, compassion or empathy and a solution to the problem.

If a person doesn't know they have it, and his or her environment is troublesome, what conclusions can they draw? The conclusion I came to was that I was weak. Of course, not all people will have sensory issues, but this concept that I've stated here can and does apply to other aspects of life. Well, let's just look at the way I started this and the Surprise Symphony. I could not understand for the life of me why everyone had to scream, jump, and laugh at it and yet I would become that animated at conversations about weather or auto racing. This crossed my mind, but I just thought that everyone else was different and that I was the normal one.

To close, as I could probably write an excessively long post on this matter, I would hope this post has shed a different light on this debate. I have Asperger's now, and I had it then; that's a given. Back then when I would try and speak up for help, or if something was bothering me, too many times I heard, "no it doesn't" or a variation of. If I knew I had it, and those around me knew I had it, I think things would have been easier. Yes, this is why I do what I do and this is why I've toured the country for over a month because, if all know it, I'm going to feel more comfortable to speak up and instead of being denied my feelings I might just hear, "I know, let me help."


  1. i think you are an amazing person, i have two children, teens with aspergers and after reading your blog i have hoep and you have given me much strength. do you think you would come to brooklyn to speak? if so my email is, please email me, thanx

  2. So true. This is why I get uncomfortable when I hear people fighting 'labels'. These people usually don't want for someone to have a diagnosis, since it puts a label on them and marks them. I understand their sentiments, since I've had the answer 'you probably won't be able to do this since you have autism' too. But there have been many more times where my diagnosis has helped me, than where it has stopped me.
    Without my diagnosis, I would've had a harder time getting the right help (government profit, jobcoach, etc) and a harder time explaining myself.

    About your music teacher. I don't know if it wasn't, at least partially, her fault. I can see that it's hard to help someone if you don't understand the person, but to just deny someone's feelings? Just because you haven't got a diagnosis, that doesn't mean that you instantly feel everything the same as other people do and I would surely hope a teacher would know that. Every child is different.

    People are fighting against 'labels', but at the same time we believe it's normal for people to disregard other people's feelings, because that person didn't have the diagnosis yet.

    To me this just states even more how much we DO need diagnosisses. For people that still think we don't, I just say this: If you want labels, or diagnosisses, to disappear, then change people's attitudes and the system. What do I mean by that? Make people aware of that people are just different and we shouldn't so easily disregard someone's feelings. Also, make it so we don't need a diagnosis to get stuff like government profit, jobcoaches, PGB (for Dutch people), living by yourself with guidance, etc.

    Don't just take the labels away, as long as we need them to get the right help. Take the need for them away.

  3. We struggle every day with our 11 year old knowing he has AS, he hates having it, he does not want to have it, and gets very angry that he has it. However, this post reassures us that we made the right choice, thank you.

  4. my mom chose the 'don't tell' side. As a person who had just learned about asperger's syndrome during a time when there was little awareness of it, she did the best she could to handle the situation and was well-intentioned From my experience, however, I did not know what was normal or acceptable and it seemed that i couldn't do anything right. that left me with a sinking feeling of "whats wrong with me?" and the worldview that there are people good things happen to and people who are just destined to get the short end of the stick in life and I was the latter. It would have been helpful for me to understand why I wasn't like my neurotypical peers and given me a headstart on learning how to find value in being different.