Tuesday, April 8, 2014

Conversing With An Autistic

Hi there! In the very short time I've been diagnosed autistic, I've come across some very confusing or downright asinine ways people address me and some other autistics while in conversations, both online and in person.

I thought I would be nice and put together a cheat sheet for people to refer to when they are in contact with an autistic. Now, mind you, this is based upon my experiences as both an autist and a mother of an autistic, and in no way does it reflect the attitude of the autistic community as a whole.

Step 1. Say, "Hello, my name is ----." Wait for a response.

Step 2. Talk to us like you would a person. Because we're people. Who knew?!

Step 3. Never say, "But you can't be autistic! You're so pretty/married/verbal/smart/independent." This is a tip off to the autistic that you may just be someone to kick. Not that we kick, but we might want to kick. By we, I mean "me."

Step 4.  No small talk. Get to the crux of what you're discussing or wanting to discuss. If it's the weather, it'd better be pouring.

Step 5.  Want to discuss autism? Great!
Now, this is a biggie. If you are in a discussion about autism, person first language, or functioning labels, put on your listening ears. You're actually talking about autism with an autistic. There is this thing called being polite, which involves digesting what the other person is saying. Don't assume to know better.

Don't tell me what to call myself. Don't assume to know my functioning level or that of my child. To do so is to make yourself look like a jerk.

My least favorite thing to hear is, "Don't let autism define you! It's only part of you!" Yes well, that might be so... but my skin color, natural hair color, and being a female are only part of me, too, and I can't get rid of any of those things. All of those things in some way define me.

Last thing on this: if you ask an autistic for what autism feels like, allow them to answer. Don't then negate that. It makes sense to ask an autistic what autism feels like. Would you ask a non parent for parenting advice?

Step 6. If we're in person, don't hug/squeeze/or otherwise touch us unless you know it's okay. Some of us really don't like to be touched.

Step 7. "Well, if you're autistic, what's your autism talent?" Just... no. Ask what we're interested in. Something like 2% of autistics are savants. I'm not one of them unless you count my amazing ability to swear.

Step 8. If you say, "Let's do this again" please mean it. I'm going to take you very literally.

If you've read through this and you're wondering what can you say to an autistic, or me, well... I think it's safe to say a good majority of us appreciate debate. I know I do. However, we hate having our neurology used against us. People do that quite a bit and it feels like a knife in my stomach- I can't speak for others.

You can talk to me about:
- our families
- autism
- politics
- flowers
- world news
- books
- music
- special education
- healthcare
- work
- and plenty of other things.

Wednesday, April 2, 2014

The "Look" of Autism

"He doesn't look autistic."
"She looks so pretty, are you sure?!"
"But he's cute."
"Did you get a second opinion? Because he looks so normal."

A picture is worth a thousand words, or so some say.

Beautiful children. 

Can you see how hard someone has worked to be able to say "hi" or say their name? Or write a name? Or conquer anxiety? Can you tell who has difficulty with language or who scripts all day long? Which ones are toe walkers, jumpers, bolters, wanderers? Which people have participated in ABA, OT, ST, hippotherapy, or water therapy?

By looking at pictures, are you able to pick out which kids are in inclusion classes, self contained, or a combination?

You can't tell. You cannot tell by just glancing at a picture of someone that they are on the autism spectrum, or where on the spectrum they are, can you?

There is no single "look" to autism.

Autism is different walks of life, different religions, different races, different ethnicities, and different genders.

Autism might be verbal, non verbal, tall, short, curly or straight haired. Someone who is autistic may or may not flap their hands, need chewies, fidgets, or a gait belt.  Autism might need 1:1 support in school or moderate support. You can't tell by looking.

By glancing at the kids, can you tell who have parents who are politically active, volunteer endlessly at the school, protest at the capitol in favor of better care for the disabled, advocate across our communities for students with IEPs, who's more comfortable behind a computer, or run organizations dedicated to the betterment of families with disabilities? None of us are wallflowers when it comes to fighting for our kids' rights, we all just do it differently. Autism, for the children featured here, looks like very dedicated parents. I am one of them.

With autism acceptance and awareness month upon us, please keep in mind that appearances are deceiving. Never judge a book by the cover. Never think that you know someone's mind or situation because you've been around them for five seconds. Please, don't think it's okay to use a phrase like, "But he/she looks ----." No matter how you phrase it, "normal," "low functioning," "high functioning," it usually feels odd and from my experience, you can't just neurology from looking at someone. Tell us our kid looks cute. Or that our child is sweet. That's usually okay.

Oh, and if our child doesn't "look" autistic... maybe it's that new haircut the kid's sporting. We only bribed the lady with an extra $20 or so.

*Thank you to the parents who allowed me to use their child's image in this post.