Thursday, October 23, 2014

The Autism Learning Curve

Day 23 is...*takes deeeeeeep breath*...

"The parental autism wire; the intricate fascinating woven web of networking the autism parents enter into and create to find and absorb information when their child is diagnosed."

But I'm just going to call it "The learning curve".

All I can really point to is my own experience.  Lily was diagnosed ADHD when she was about 2 1/2.  The doc wanted to wait six months until she turned three in order to diagnose her on the spectrum, so six months later, we went back to her office and she RE-diagnosed her PDD NOS with ADHD.  This gave her an autism diagnosis and Leslie and I entered the octagon.

This isn't really about our reactions to diagnosis, but is more about what happens to parents when they get the diagnosis, along with some generalities of my own thrown in for 'seasoning'.

Okay...we became "aware".  The becoming aware thing is like buying a new car.  When I first moved to Pittsburgh I was driving a Ford Mustang.  And no, not the 5.0L Mustang, or I'd probably be dead...the four cylinder "looks like a Mustang, drives like a Tercel" Mustang.  So after the first year or so living in Pittsburgh, I bought my first ever new car from the dealer.  A 1996 Volkswagen Jetta.  It had a CD player (in the trunk) with a six disc changer, yo!  I'm getting to my point.  After I bought my Jetta, I started noticing ALL THE OTHER JETTAS!!!  Holy shit!  Who knew how many Jettas there were!  Obviously they were always there, but I didn't really "become aware" of them until I had a personal interest in Jettas.  Lily's autism became our Jetta.  Look at ALL THE AUTISM!!

Over the years that Leslie and I have been married, we've become "aware" of lots of things, but one thing that I think my own experience has taught me..."spreading awareness" is a very low rate of return for time invested.  I'm not saying that it's not still a great idea to educate or whatever...but just don't expect to change the world with your campaign to spread awareness.  People become aware when they have a personal interest in becoming aware, regardless of how much information with which you inundate them.  Whether it's awareness of autism, or disability rights, or hemophilia, or cancer, or whatever...there's SO MUCH ...MUCHNESS out there, you just can't be aware of it all.  You're overloaded with ribbons and armbands and blue porchlights and purple flags and god knows what all.  I guess what I'm saying...don't be too surprised or too disappointed at the ignorance you encounter, and don't be so damned hurt or broken about how judgmental people were those same exact judgemental ignorant people exactly one day before you "became aware". 

*Steps off soapbox*

So we started noticing autism stuff everywhere.  My wife worked for a company (still does actually) that provides residential housing, treatment and education for autistic kids (and others) and so I think HER path was a lot different than mine.  I was the googler.  I was the blog reader. 

The first resource I noticed was Autism Speaks.  I noticed them because they're huge and impossible to miss.  They became my source for everything autism related.  (Until something huger and less impossible to miss comes up, you Autism Speaks haters will have to make your peace with that and just compete to get YOUR message out.)  So my path immediately took me down to the corner of Cure Avenue and Tragedy Boulevard where I meandered for maybe a month or so.  Because they were the only narrative I knew...they were the gospel.  I wasn't a bad person because of it (and if that's where you are...neither are you) it's just all I knew. 

Somewhere along the line I started reading blogs.  I think it was through twitter initially, but I can't remember.  I searched #autism on twitter and added everyone that it returned.  Pretty soon my twitter feed was essentially all things autism.  That meant I got both sides of every story...but it also meant I really had no idea what to believe.  They all seemed equally authentic...from the people blaming big pharma and pimping faith or snake oil to the people mocking them as conspiracy theorists and woo peddlers.  I thought "Natural News" was a trusted source.  I wasn't a bad person because of it (and neither are you if that's where you're at)'s just all I knew.

But I noticed the blog links and read them.  Then when I found a blog I liked, I read and commented everything.  Then I followed every blog that person linked on their page.  Then I read and commented everything on those blogs.  I started finding groups of people that I identified with.  I started writing my own autism blog.  Pretty soon the people who I was constantly peppering with comments were commenting my blog, and we had a dialogue going.  They became my 'tribe'.  I suppose if I'd found different people first, my tribe might look a lot different.  But I'm happy with it.

Around that time I had realized that Autism Speaks wasn't for me.  That it was too hard to fight people any time the name came up.  That their message wasn't my message and their path wasn't necessarily my path.  I started looking for local charities.  I got in touch with my current charity on the recommendation of an autistic adult who blogged and lived locally.  The charity thing is nice.  They have so many more connections locally  And no matter how much information you get in general from social media and blogging and google...sometimes it's nice to know there's somebody just down the street who gets it.
Next came facebook. Joining groups that the people whose blogs I read were in.  Talking to them in forums about autism in 'real time' instead of commenting then checking back.

That's when I really started bumping into people who bumped back.  They had a different view/path than I did.  They were offended by my view.  Fuck them, I thought, at least initially.  How dare you take offense!  This is my daughter!!  And they weren't bad people for being offended by me.  But I didn't know that yet. 

I eventually tried extremely hard to make friends with those people.  I found that the harder I tried, the harder it hit me when I'd get slapped down by someone with a different view, and eventually I stopped trying to be friends with the people who didn't want to be friends with me.  I just recognized that they were on a different path than I was, and that it was okay.  And I even recognized that their path wasn't necessarily helpful for me to attempt to follow.  This is coming out sort of garbled and cryptic.  Let me restate:  Not only isn't your view of autism the only view, but your goals aren't the only goals.  Your goal may be "help my daughter be all she can be".  Their goal might be "end ableism".  And both goals are actually awesome, but that doesn't mean you can work together necessarily.  Because at the end of the day they want X...and you want Y...and sometimes those goals don't work hand-in-hand and they don't understand why you can't see that their goal is really what's MOST important and please drop everything and get with the program! have to do what's best for you and your family.  I'm not saying "Stay out of autism politics" because sometimes that is what's best for you and your family in the long run.  I'm just saying...stay out of politics if you want to save yourself a shitload of stress, frustration, and hurt feelings.  Just recognize that whatever their feelings for your path and your experience, you should try to understand that the same passion that lights a fire in your belly does the same in theirs, and if you clash from time to time, then understand that we fight hardest about the things for which we're most passionate...disengage if the only thing keeping you in that fight is pride.  Because they're trying really hard to do good things just like you are.

How did I get back on the soapbox?  *steps off soapbox again...feels the burn in the thighs* diagnosis, google, links to big charity, twitter, blogs, alignment with local charity, facebook groups, and now...I'm an expert.  I kid.  

You grow and change throughout the whole process.  You find that the person who wanted to cure his daughter becomes the person who wants to cure the world to make it safer for his daughter instead.  You just...evolve.  That sounds condescending because it makes it seem like "I'm in a better place now...someday you will be too" but what I really mean is...all the truths you passionately defended when you started your journey will become the shit that makes you cringe later. 

Like somewhere out there right now is someone reading this who can probably remember a time when they BLASTED someone for saying "autistic" instead of "child with autism" but then over time and experience flip flopped and now says the exact opposite.  And the person you were who found "autistic" offensive is still just as good a person as the person you are now who finds "person with autism" to be ridiculous.  And maybe you'll look back at things you've written, or recall conversations, and maybe inwardly blush at what a dipshit you once were.

All of that stuff is me.  And I have no doubt that the stuff I believe in my heart of hearts right now will shift and morph and change with exposure and experience until I look back at this and inwardly blush and cringe at what a dipshit I once was (am).

And that is why it's really important not to be a judgmental dickhead when someone says something "wrong" to you.  When someone says "high functioning" or "mentally retarded" or "autistic" or "cure" or "Big Pharma"...stop.  Take a deep breath.  Weren't you just that same person not long ago?  Before you blast them back into whatever place they just got up enough courage to emerge from...remember when you were exactly where they are now.  

This learning curve is steep.  But after the sharp climb things start to settle down, and that's when the minutia that you pushed off in order to process the big stuff starts to seem more important because the really big stuff is behind you ( least "known").  

You can't spread awareness without spreading autism.  At least that's what I think.  I think people know what it is to an extent, but they're confused too.  And ultimately they really don't care to explore it any deeper because they have other shit to worry about.  So when a nationally syndicated talk show host like Michael Savage says that autism is a fraud and a racket...they become aware of it, and it becomes a fraud and a racket to them in exactly the same way that autism became a tragic disease needing a cure when the only voice I heard speaking the autism language was Autism Speaks.  That's where their awareness starts and stops.  1)  See autism mentioned, 2) Hear media portray autism as X, 3) Develop opinion that autism must be X.   4)  Think about stuff that is more interesting/personal.  Without a personal stake in the game, there's no true "awareness", nor is any likely to develop. 

So take that into consideration the next time someone says something to you that you find highly offensive.  They don't have the "benefit" of your learning curve.  They haven't absorbed the diagnosis, the social media, the groups, the charity, the jargon or the politics like you have.  It's not personal to them, so they don't understand how personal it is to you.  So try...try so very bite your tongue and "educate" without anger.  The person you piss off today immediately becomes deaf to your voice and cause.  

And some people out there on my path...and on other paths ignore that to the detriment of their cause.


  1. "Do the best you can. Then, when you know better, do better."

    I believe this whole heartedly. I try to approach others with the attitude that they are doing the best they can, in that moment. We are all continually evolving. Thanks goodness. :)

    This journey with autism changes and meanders and turns and stops and starts again. Never a dull moment. And no matter where another is on this journey, they may have something I can learn from them. Even the newbies. The learning curve is not a straight trajectory. At least not for me.

  2. Great great post. It is genuine and direct. Love it.

  3. Thanks for writing this down. The entire journey after my sons initial diagnosis was really complicated and long. I feel like reading your words helped untangle all of the thoughts I have about that experience in my own head. Thanks dude. You said things that have been bouncing around in my own head and heart. *fist bump*

  4. I think what's best about this post is that it shows what kind of person you are in general. I suspect that the same emotional/logical tools you use to accept your path and be less judgmental about others' paths in relation to autism are the same you use in relation to cancer awareness, politics, parenting in general, and hell, just being a good person. Thanks for sharing your journey.