Stigma!!!!

Stigma. Defined, it is  a mark of disgrace associated with a particular circumstance, quality, or person. 

Whenever I write or read that word i hear it in my head as if Dr. Evil is saying it from the Austin Powers movies. "STIG-MA" and I so want to slowly place my pinky to the side of my chin and raise an eyebrow.  It just holds that much power.  It should be given that much latitude.  STIG-MAH!

I know from parenting a child with autism for 10 years that the public at large and in generalizations are fraught with opinions and ignorance.  I myself an guilty of an ignorant mind and heaven knows that I am just full of self importance and opinions. I have opinions about so much sometimes I have to put my hand over my mouth to keep them from coming out. I guess my experience me enough to learn to put my hand over my mouth and shut up.

On the autism part, when people hear that my son has a form of autism they assume he is developmentally delayed to the point that you are supposed to speak to him like he is an infant.  Nothing ticks off a brilliant aspie more than saying, "HEEEEY BUDDY!"" to him.  Ok, I stand correct, it ticks him off even more if you try to put your hand on his head and muss it up.  Oh boy...people have almost been hurt.  Anyway...back to topic...I don't know why people assume that when MOST people with autism of any level on the spectrum do not want to be spoken to like they are 1 year olds.  I'm not even sure 1 year old babies want to be spoken to in such a way.  Really!  What is the matter with people.  I never spoke to my kids like they were kids...I spoke to them like they were PEOPLE!!!!

The other side of that ignorance about autism is the multitude of people, some strangers-some NOT, who say things like, "he looks totally fine to me".  Now I have had some folks who say this in a supportive way, like they are trying to tell me that because he doesn't look autistic they are of the mind that he will be just fine in the world.  Then there are the folks who say it in a way as if they are questioning his diagnosis.  He seemed fine to me, he was playing with the other kids and laughing and I saw no signs of autism at all.  And to that, what should I respond..."Oh my gosh...he's cured!!!!"  or "Oh my gosh, the doctors must all be wrong for years and years and you are so much wiser than anybody else".  There are comments that fall in between these two versions but these two themes continue to pop up on a regular basis.  My reply to them is always, "I know."  I just got tired of explaining it and educating those who don't really seem to want to learn.  I'm not saying that they don't care, intentions are always positive but not always thought through to the level of compassion.

As we have recently entered the world of mental illness diagnosis I am learning a whole new level of stigma...did you hear Doctor Evil in your head..."STIG-MAH!".  I know there are a lot of things called mental illness these days but lets take the clinical diagnosis serious, shell we?  As I am researching my son's new, upgraded diagnosis which is a more severe form of bipolar with some other serious mental illness thrown in like a tossed salad of crazy, I am reading blogs and watching vlogs of folks who live with these different diagnosis.  I am stunned and heart broken to report that without exception, in every single account from one of these folks with these serious forms of mental illness they all say that they are tired of people telling them to just "cheer up" or "get over it".  I was reading a chat room where someone posted a question regarding general facts and statistics and some ignoranus decided to offer their advice again saying to "move on and chin up".  I wanted to reach through the computer and punch the person who wrote that.

Just who do we think we are anyway?  How can we tell someone to get over or chin up through something that we can not even fathom??? Just because we don't see bleeding or bruising does not mean that there is not legitimate pain!  Believe me, I am watching my son struggle with legitimate pain every day right now.  He feels isolated, alone, terrified of the demons inside of him, anxiety over whether or not he will have the strength to manage himself next time the mania comes or the depression kicks in.  He does not know how to relate to his peers, how to talk to them, how to tell jokes with them.  He is not sure if someone is mocking him or being genuine and to protect himself has taken the stand that it is best not to engage instead of find out later that you were only being made fun of in front of others as people pretended to be your friend. Can you imagine not understanding those social nuances, the secret code of socially appropriate behavior?  Can you imagine feeling fine one second and the next being sure that the world would be a better place without you? Feeling excited and hopeful for a while and then thinking it is just too exhausting to keep going on, to keep trying.  Your brain chemistry betrays you and either it is creating too much happiness or has created a chemical drought of happiness that causes you confusion and pain all over.

Not everyone's mania looks the same.  Not everyone's depression looks the same. Just like autism, no two people with the same diagnosis look the same but there are similarities that are shared but not identical.  In fact, I find that there are no two mania episodes that look the same although there are key identifying factors.  Distraction is the key to moving forward. Distract from the mania and distract from the depression.  Keep carrots in front of the cart, keep physically moving.  Obstacles, stress and boredom are playgrounds for the mind to go awry.

With all good intentions, some close to us feel this is too much work for me as a mother. A single mother with no real family nearby, handling all of this alone, it is too hard and invasive to my life.  Some worry for the safety of us all with such irrational thinking, exhaustion and intense episodes.  For some, it is just too hard to understand at all and they pull away.  I heard one girl on her vlog say those who did not run for the hills when she was diagnosed came back with torches and pitch forks.  How heart breaking that this is her perspective and I wish I could say that I did not understand.

We do not need to run for the hills.  We do not need to protect ourselves with pitchforks and torches.  Mental illness is scary, frightening, exhausting and completely overwhelming.  Autism is sometimes loud, ugly, violent and isolating.  Both are equivalent to getting hit by a truck but getting hit by a truck offers the hope of healing and instead of people running away, they run to the victim to help them.

I have had family and friends say that they do not know how to help me...prayers are sent, good thoughts are surrounding us but some days it does not feel like enough.  Some family and friends have already packed and ran for the hills.  What we need now is support. I need the torches to light the way to compassion, open hearts and strength.  I need the pitchforks to scare away the demons that haunt us and the isolation.  We need to feel the support of those around us now more than ever.  People to come and hang out with my son, my daughter, myself.  Someone come and take them to a park, or a hike or to a movie.  What if someone offered to take them to their classes while I arrange the IEP's or call the Crisis Team.

Where are the casseroles we would bring the victim of the head on truck accident?  Where is someone to just hold our hands because WE are scared and confused and exhausted?  But this is not cancer, or a truck accident or something that others can see...this is mental illness and autism.  This is a perfect storm in the brain.  This has involved suicide attempts and deep darkness that can consume the light and hide it away.  This is scary and can touch us all.  We have all smelled or tasted that darkness at one point either in ourselves or someone we love.  It may not be understood because we all fear it in ourselves.  It is insidious and confusing.  Isn't it easier to stigmatize it then to face it?