You don't look autistic?!?

 As I have come to terms with this new reality and understanding about myself, I share it with others as well. The common response that I get is a confused stare and some sort of phrase that says, "You don't look autistic". It is as if I should have some sort of distinguished traits that tells everyone that I am an adult with autism. That is not how it works. It is not like someone who is blind where there is a clear indicator (even that you should be careful because assumptions are bad). The problem is that our society is still trying to catch up on their understanding of what autism actually is and how it presents itself within an individual.

First off, autism is a neurological developmental issue. That means that most of what is happening is happening within the brain. So unless you are hooking me up to an MRI or cat scan or whatever those machines are that they use to image the brain, you won't see anything. Most of the traits that people associate with autism are secondary traits that present because of the primary traits. Depending on a number of factors, including the severity of the primary traits, intervention methods during development, and coping methods learns you may not have many outward facing signs.

So lets do a little experiment. I want you to get a glimpse into how it is to be me. Note...this is not true for every person with autism, it is a spectrum which means it may not be the same for every person. So get some headphones or a speaker and start playing some music with a lot of vocals. Then grab a flashlight or two and turn them on and hold them above your head so that they are just inside your eye sight. They shouldn't be pointed directly at you but they should be noticeably bright to your eyes. Now try to have a conversation with someone. I will wait while you figure out just how hard it is to converse.

For me, I have a lot of sensory issues and processing within the brain. Lights are bright and if they are at the wrong angle, it makes it almost impossible for me to focus. Fun fact, the church I have been serving at has both some stage lights and some lights overhead. You would think that the stage lights cause issues but it is actually the lights overhead because they hit at the right angle while the stage lights are not. I also hear everything...EVERYTHING. My wife would then say, "if you hear everything, why do you zone out so often" (not really we have worked past that a while ago on this journey) and that is because I process so much that I have trained myself to basically shut down so I don't get so overwhelmed.

So lets bring this into a more real life situation. As a pastor, I often go to trainings provided for us and so I have to enter into a room where 30-60 or more people are all conversing. That means the noise is cranked up and I am hearing all of the conversations. Then if the lights are bright and at bad angles, I begin to struggle with sensory overload. I get overwhelmed and I have to work that much harder to just hold a conversation. All of this does not take into account other factors such as my speech processing issues and social issues.

Yet all of it is hidden from sight. The most that you may see is me just sitting or standing with a sort of blank stare on my face or a "concerned" look on my face and I have grown quiet. I am not mad, I am not troubled, I am not worried or anything else, I am trying to get a bearing on my situation because of all the sensory data and social factors my brain cannot process.

I am blessed to have come this far. As I began my training as an RBT (Registered Behavior Technician) for ABA, I was informed that 80% of adults with autism are unemployed. That comes from a bunch of factors but the biggest is that intervention help from insurance companies stops around age 7. I am employed. I also completed high school, earned my bachelors, and working on my masters. This is not typical for adults with autism. By God's help, my parent's training (though they had no clue I had autism growing up) and the blessed factor that my fixations aligned with socially acceptable jobs has allowed me to be "successful". Yet just because I have done all of this does not mean that every morning that I wake up I don't wrestle with myself to just get going for the day. I fear the social interactions I have to have. I wonder what sensory input will be too much for me. I pray that I don't get drained too quickly so I can give my children grace and love at the end of the day.

The next time you hear someone say that they have autism and you wonder how that could be, grab some headphones and flashlights and be reminded how easy it is to not see what is happening within the brain.