Sunday, March 17, 2013


My friend Amy posted this picture on my Facebook page the other day.  She said it reminded her of this blog and the message I am trying to get out about acceptance.  I really like it a lot, and I agree with her!
I often feel like the doctor when I'm talking to other parents about autism.  Especially when I hear people saying things like "With this therapy/diet/cure, my child is in regular classes! He never stims!  People say they can't even tell that he's on the spectrum!"
First, it makes me sad for their child.  Because the implied message is "My child now appears normal! Isn't that great?"   If their child is happy and able to do this with his or her self esteem intact, great.  I just wonder how hard that child is working to keep up appearances.  I wonder if they ever get the message of acceptance and unconditional love.  I'm not saying these parents don't love their children, in fact, I'm sure that they do.  It's just very hard to get the message that you are amazing just as you are, when you are rewarded for acting like something that you are not.
Secondly, people who push certain therapies or various "cures" and diets because of the spectacular normalizing results they've had tend to forget that autism is our neurology.  It is how we experience life on this planet.  Autistic people are constantly growing, adapting, changing and learning just like every other human.  At their own pace, in their own way.  In addition, most of the evidence that diets, "cures", and therapies even work (and by work, I mean to eliminate autistic symptoms) are anecdotal and situational.  I'm not saying that some  therapies  aren't great at helping people with their challenges and to adapt to what can often be a pretty hostile world to autistics.  I'm just saying 8 hours a day of ABA when you are four years old leaves very little time left to just be a kid.   Learning with your child from a place of respect for his humanity and dignity, that's great.  Forced compliance in attempts to eliminate autism....not so much.  The therapy should be about helping your child with challenges, not changing them into someone they are not.  Unfortunately, the latter is what many parents want.
I think it is hard for many people to understand just how hard it is to grow up being told that the way you are is fundamentally wrong.  How can you grow up loving and accepting yourself when you are constantly taught forced compliance?  When instead of any efforts being made to understand you and the unique ways in which you communicate, you are trained to "act normal"?  The answer is: you can't.    I realize this goes into deeper societal problems, like our inability to see children in general as individuals deserving of respect and compassion.  That, along with how we infantilize those with disabilities, especially those with developmental and intellectual disabilities.
The first step in eliminating much of that is simply acceptance.  It starts by just learning to appreciate each human for who they are and how they communicate, which doesn't seem like that controversial an idea to me.

Sunday, March 10, 2013

It's a start....

I've wanted to write a blog for a while now, but as with most things in my life, I don't follow through.  I always have the best ideas, but I'm not so great at the actual doing of the things.  This is my attempt at actually following through with something and I'm going to try very hard (with time and ability considered) to keep up with this.
This past summer, I was told that like my son, I am on the autism spectrum.  This was not surprising or unexpected.  Since my son was diagnosed (and actually even before, since I knew years before he got his "official" diagnosis that he was on the spectrum), I have suspected that this was the case.  Having it confirmed by a professional was a nice touch though.
Growing up, I was just considered extremely shy or a "huge pain in the ass".  I had selective mutism and actually did not talk at school or to many people outside of my family until I was well into high school.  I actually had a guy I went to school with from kindergarten through my senior year of high school find me on Facebook and ask me if he could call me just to hear what I sounded like.  I didn't take him up on the offer because of my massive phone anxiety, but thought it was pretty funny that my weirdness left such an impression on someone else.  I was also a troubling student as I was extremely "non compliant", I self injured, and cried all the time.  Over the years, many of my teachers would try to help me, but not really understand how.  They thought I was just extremely shy, spoiled and narcissistic, when in reality I really just didn't understand social rules and cues.  I didn't think of what other people thought of me at all.  (though years of being told what they DID think, that I was weird and creepy, have now left me with the opposite problem.  I worry way too much about how other people see me.  I'm working on it.) I was just terrified and confused by  every social interaction.   In high school, I was diagnosed with a severe anxiety disorder.  In college, PTSD.  I self medicated.  A lot.  I finally stopped.  I met a guy who liked weird, creepy types.  We got married.  We procreated.  Our son was diagnosed as autistic.  I made mistakes.  I learned.  I became passionate about neurodiversity and autism acceptance.  And, here we are.
Of course, I've left a lot of things out, but that's the basic story.  Along the way, I learned that I sometimes could make people laugh intentionally.  Like, not just at me.  So, I sometimes try to be funny.  Usually it works, but sometimes, it doesn't.  I am always passionate about my beliefs, but I try to be open minded as well.  I try.  Sometimes I succeed, and a lot of times I fail.
Oh, and about the title of my blog, it's from the Devo song "Through With Being Cool".   Which is basically about militant nerds.  Naturally, I could relate.