Saturday, April 30, 2011

Please, spread the word

So, it's 11:40 PM around these parts. Do you remember the last day I was up this late? Okay, so actually, I do (January 4th-5th, 2011)... but that's beside the point. The point is that this is late for me. I've been out almost nonstop since noon. One panic attack and zero meltdowns later, I'm back at home, having swum, worshipped, shopped, shopped some more, visited with Heather and her cats, and who knows what else.

I have hardcore rituals that I go through, step by step, every time I sit down at the computer. The list of websites to check and updates to peruse is extensive (8? 9? sites), but tonight I will skip them all. Except one. Okay, two, because I did check email. I will come here and only here because what I have to tell you cannot be held back for one more day. It's that important. Your task is to spread the word on this one... tweet, Facebook, blogs, verbal, I don't care. I don't care if you share the post or just the sentiments behind it. Tell your boss, your neighbors, your educators, your local politicians, your hairdresser. I don't care. Just tell.

So here goes.

At least for me, disclosing to someone that I have autism requires a very basic amount of trust. I won't tell just anyone. Yeah, sometimes I say it when I shouldn't, and sometimes I don't say it when I should (remember a few posts back?). Come to think of it, I frequently get it backwards. But if I say it, then on some level, you have some credit with me.

People respond in a variety of ways, but frequently, they say this or something like it: "You don't look like you have autism." or "I never would have guessed." or "You must be very high functioning, then."

Now, I'm not going to bash anyone for doing this, because first of all, they usually mean it as a compliment. Secondly, it's just a lack of education on how it feels to receive such words.

To be frank, I went through 21 years of sheer hell before I got a diagnosis and subsequent medication, therapy, services, etc. Horrible meltdowns, a ridiculously overwhelmed sensory system, lots of self injurious behavior with the scars to prove it, suicidal thoughts and plans, tons of bullying, periods of random nonverbal times that no one understood... you get the point.

Then, even my "good" (read: not necessarily good in terms of happy but in terms of functioning level) days are hard won. I. Work. My. Butt. Off. to come across as "normal" as I can. I bite my tongue so hard it bleeds so that I don't have to wear headphones in church. I talk until I literally have to excuse myself to gag over the toilet so that I don't have to be nonverbal and stand out. I go into Target with Heather, because "normal" people do that and like it, and have a panic attack, sweating and shaking, but I put my hands in my pockets and put my hair up to hide it. All today, and today was a "good" day.

And yet today, someone (I won't say who it was, but believe me that if anyone should know better, it would be this person) told me that had they not seen my diagnosis in writing, they would never think that I have autism.

Can you say invalidating? What I've been and still go through because of this disorder... I don't know. I don't really have the words on this one.

Now, Debbie Downer as I might be at times, one thing I've learned and hold to is that I don't like to say "don't do this" without following it with a what you should do.

When someone tells they have autism (or, heck, anything!) and you're surprised, do not say "Really?" or "You don't look/seem like you do" or "I wouldn't have believed that!"; rather, say....

(Do I have your attention?)

Say, "What do I need to know about how it affects you?"

No pity (and if I seem like I'm asking for it because of my lists of what I deal with, just, no. I'm not.). No babying. No mollycoddling.


So, now you know, and now I turn you lose to tell anyone who will listen.


  1. This is EXCELLENT! I TOTALLY agree!

    p.s. WHY do I have to hit the post comment button like 4 times before it finally posts the comment. DRIVES ME CRAZY and I think I have the hardest time on this site!

  2. ELiana you too? Thought it was just me had to INSIST on posting! LOL!

    I will spread the word :)

  3. Sorry, guys. Blogger drives me crazy at times, too. If I had the money (and the knowledge as to how to do it) I would switch over to my own domain name. We'll see in the future...

  4. This can go for so many other silent/invisible disorders and diseases too. I know a big complaint of people with MS is that people judge them for using handicapped parking or needing other help because they think they're "faking it."

    I think your advice is really great and applicable for a LOT of life situations. Thanks -- I'll remember that next time a situation like yours comes up.

  5. SO. GOOD. thank you, lydia. thank you for telling us.

  6. Hi Lydia,

    I am so glad you had a great day. And, you have really, really good advice.

    The person that commented about the diagnosis should definintely think before speaking. UGH! As a previous post stated it happens not only with autism but other issues as well.

    Mrs E

  7. Oh that is powerful advice. Thank you.

  8. Thank you for telling me. That is good stuff to know. I too had many of the experiences. Shutdowns, instead of meltdowns. You put what I was feeling/thinking into a comprehensible blog post. :) Have a good one.