This has happened more times than I can recall, but twice in the past month-and-half and each time it does I don't fully know how to react. One instance occurred at a presentation and another during an event shortly before the SKUSA Supernats. What's the instance? It's odd, but it's almost worded the same and it's when someone utters the statement of, "but you don't look like you have Asperger's."
Before I continue let's evaluate the statement. First, and I must say Asperger's is sometimes substituted with the word autism, by the statement there is a defined "look" that a person is supposed to have per these statements. What would this look be? Does this mean a person with any diagnosis within the autism spectrum must have a look or therefore the diagnosis isn't valid?
Secondly, how am I supposed to take this comment? Is it intended to be a compliment. Another frequent line thrown my way is, "oh, I never would have known" which again, I think, is a compliment. However, at the same time this compliment gets a bit murky because, as I hear it, I'm "normal." Don't get me wrong; there's nothing wrong with whatever the myth of the week of what normal should be is, but telling me I don't look the part, or I don't act the part, or I don't speak the part, or whatever it is that is said my way instantly does two things. Firstly, it puts a great deal of pressure onto myself as if I'm on the witness stand and my being is on trial for, do I actually have it or is it just an act? This probably isn't the intended consequence of the statement, but that's how it makes me feel. Secondly, it discounts all the challenges that I go through.
The title of this post is, "the invisible battle" because often times that's what I feel living life with Asperger's is like. Perhaps the word silent could also fit in there somewhere because, when I'm told I don't look the part, what is lost is what life is really like. Again, I think it's a compliment, or an attempt and a nicety, but what it does it makes me feel awful about all the times that I have had problems, or sadness, or severe depression back in the days I loathed my diagnosis. However, I'm being told I don't look the part therefore I feel as if I should be normal and the challenges I face and daily anxieties I have shouldn't be there.
It seems odd that an attempted compliment could cause a response like this, but the exact wording of this often creates this. Maybe there's a better way of going about it. How? I'm not sure, but telling me I don't look the part discounts every bit of challenge I've faced. The other thing is it puts every person on the autism spectrum into a box as if we all are supposed to look one way, act one way, speak one way. It doesn't work this way and yet I know this and yet when I'm told these things I try to smile on the outside, and then decide if I need to prove to the person that my diagnosis is valid, and on the inside I am in a frazzled state of wanting to break down and cry.
The last thing I ever want to do is to defend my diagnosis. I don't know if anyone can appreciate what it is like trying to prove to someone that one's own diagnosis is true. I come across this a lot because, being a public speaker, I don't fit into this box and therefore I often get the, "you can't possibly have it!" Maybe my solution should be to tell them to read my book; to let them know the years of anguish on wondering who I was and why I never fit in. Perhaps I could also say that my brain is a constant processing machine and there's never a point that I'm not planning or worrying about something. I could cover eye contact, or the countless other challenges I face that, to the outside observer, would be invisible.
This could be our greatest challenge in getting understanding for Asperger's because there is this preconceived notion of what we should look like, or act like. I know of one set of parents that were told their child couldn't have Asperger's because he "talks and gets good grades" which again, right there, discounts every challenge that the child and family faced.
People try to be polite, I understand that, but be mindful that if the compliment comes across as just 1% in regards to questioning the diagnosis or claiming it isn't there at all I don't take it as a compliment. Once again, I can't claim to speak for all on the autism spectrum. My experience with this may not be everyone else's, but for myself I feel as if my being, my challenges, and my tenacious fight to get to where I am, and who I am, today is lost when I'm told I don't look like I have it, or that flat out, "you clearly don't have it" and this is why the battle of having Asperger's will be invisible to many because the understanding just isn't there.