Tuesday, April 5, 2011

Life On the Road

It's only been five days since I left Saint Louis and I find that hard to believe. It was just five days ago that I headed from Saint Louis to Lebanon and had a presentation at the library. Five days?

The past five days feel like a lifetime and I don't mean that in a bad way at all. It's just that being on the road like this I have lost my routines and schedule. Yesterday was Monday and I had no clue. Again, this isn't a bad thing or a good thing, it's just a, well, thing.

Anyway, I have given 7 presentations so far and the first one in Lebanon seems like a lifetime ago. I have met so many people and have heard so many stories that I know what I am doing is a cause well worth every second of my journey.

I often get asked in my presentations if I, "live alone" and while I say "no" I comment that I think I could do it as right now I am living in hotels and finding places to eat by myself. In fact, this on the road life isn't so bad. Granted I am growing tired of fast food, but there is a since of freedom that I can't fully explain. Maybe this feeling comes from the fact that I know people are listening to what I have to say and with each town visited my words are being heard.

The #1 thing that I have learned on this tour so far is that the need for world understanding on autism can't be stressed enough. Since you are reading this I'm sure you already know this, but I'll state in anyway that every doctor and every school system needs to not only be aware of the spectrum, but they need to understand it. How long will it take to bridge this gap of awareness to understanding? I'm not sure, but the more voices that are out there the faster it will be I hope. In any case it is this need that keeps me going down the road, mile after mile, giving my stories and experience, hoping that one day I can give a presentation about, "The days of when the spectrum wasn't understood." Someday!

1 comment:

  1. My faculty mentor once told me this regarding my passion to be an autism self-advocate, "Using your perspective and do presentations are nice. HOWEVER, if you want your message to be louder and clearer so that more people can hear you, then you need to combine it with your research!" What she meant is not the research you find on Wikipedia or Google. What she meant is actually published academic research articles on peer-review journals!

    So, I am telling the same thing to you, go back to school and earn a doctorate degree in a field that can help people with autism and their families. I know you will have a longer road because you only have a semester in community college. But, think about the very first panel you were doing and who you sat with- Temple and Michael. They both have PhD's. This is something I think you should aim for.

    Nowadays, a doctorate degree is a valuable commodity in research. Also, having first person perspective is VERY POWERFUL in autism research. A guest lecturer who was in my qualitative research methods class told me this. An OT autism expert who has a PhD told me this also. The thing is- you have to be in the position to get there!