Tuesday, March 22, 2016

The Struggle: Understanding the Invisible

The funk I was in that I described last week has continued and today it intensified. At the same time I have to mention that the annual "Autism Awareness Month" commences in just a few weeks and I can make a point in what is lacking in that title by the way I feel now.

When I talk to teachers I give many examples of Aspergish-like behavior and by the end of my presentation I'm accustomed to seeing tears as teachers put together the pieces and now understand a current or former student. There is one major thing working against a person like myself with Asperger's and this is there is no visible sign. Look at my pictures, look at my videos, and look at the videos of myself at a racetrack and does anything jump out and say, "autism spectrum"? Unless you were finely trained or knew I was beforehand I'd say most certainly not and therein lies the struggle.

What does autism awareness actually mean? There can be billboards, 30 PSA ads, and radio ads mentioning that autism exists. In my six years as an Autism Ambassador for Easter Seals Midwest I can clearly avow that over 95% of people are aware that autism does, in fact, exist. Okay, that's fine, but to simply know it exists gives no depth to the meaning, the struggles, and what one can do to ease the feelings of a person that's on the spectrum in the midst of a major struggle. This is the dilemma we face; we can shout "awareness awareness awareness" but if we don't achieve understanding it will be all for naught.

You see, and I go back to how I look in pictures and the like, the problem here is the invisible struggle a person may go through. Take a sensory issue. A person that has no sensory issues, if told that a person may have sensory issues, will be about as lost as being in a foreign country with no GPS and no understanding of the language. The road signs are there but there mean nothing and if they mean nothing how can one have compassion, empathy, and be willing to help? Same thing goes with a person that may have issues with crowds. If a normal (remember, I don't really believe there is a normal) person has no issues in crowds how can they understand that the person with them, that looks normal, is going to have an issue?

I don't believe there is one path to achieving understanding but it is imperative that we shift... no... it is imperative that we blitz the point home. I've spent many nights recently alone at home and it feels very much like the life I led in the 2000's. My ability to write and express myself was born within the way I feel now, but one of my reasons for writing was so that, "maybe the world won't hate me as much." Are those extreme words? Yes they are but that's the way I saw it. I tried and tried in life and things always went askew and I didn't know why. Well, not only did I not know why but those around me didn't either because of the cloak of invisibility Asperger's can hide behind.

I won't lie; the past month has been the hardest I've had in a decade but experiencing this has brought about a focus on the goal line and the purpose to it all. I think of all the police presentations and presentations to teachers and I can't think of an audience more important than those two because they will be dealing with the invisible and unless the canvas is described in a way that is understandable the beautiful artwork that is a person on the autism spectrum is going to appear to be just random lines and incoherent shapes. Of course, this isn't the case but without understanding awareness doesn't allow the canvas to be seen or understood and when this happens the struggle continues onward and no amount of simple awareness will progress us anywhere.

1 comment:

  1. "Maybe the world won't hate me as much".

    Very relatable - even for those who write in great part to love and to be loved and to share that love.

    There is a great police presentation along with the peak body about WANDERING.

    "Without understanding awareness doesn't allow the canvas to be seen or understood and when this happens the struggle continues onward and no amount of simple awareness will progress us anywhere".