10: What Not To Say

What Not To Say

So I’ll admit, I haven’t had a ton of experience in this yet because I haven’t told many people about my diagnosis (and therefore haven’t gotten bad responses!).  Never mind. That ship has sailed.

But I know what I fear people will say. I’d love it if everyone could take a quick look at these things and try to avoid them. But I also don’t want people feeling like they can’t talk to me and if they make a mistake, it’s game over! I understand that you might feel put on the spot. I understand that you might mean well with a comment. It’s ok to make a mistake and say something wrong as long as you’re open to learning why it’s hurtful and changing what you say.

Here’s a comic by Beth Wilson that really sums up what I’d like people to avoid saying. Please go check out her site, Twitter, or Tumblr, and consider donating to her site:

Doodle Beth's comic, "What Not to Say to an Autistic Person" There are four panels showing Doodle Beth getting more and more upset, finally pulling at her hair and gritting her teeth. Many speech bubbles surround her saying, "You don't look Autistic." "Everyone is a bit Autistic." "You must be high functioning." "So you're like Sheldon then?" "We're all on the spectrum." "Everyone struggles with stuff like that." "Don't let your Autism define you." "Is there a cure?" "You're nothing like my Autistic child." "Autism is so over diagnosed these days." and "Oh, you mean Aspergers, not REALLY Autistic."

I’m not going to go into much about why I don’t want people saying these things to me (or any other Autistic person) because it’s already been done before!! These blogs, articles, and videos are done by Autistic people who have gone through this, so I want to feature their experiences and advice.

Here’s some other Autistic peoples’ lists and explanations:

  1. Amythest Schaber- Ask an Autistic #12: What Shouldn’t I Say to Autistic People? video
  2. A. Stout’s post on TheAutismSite: 11 Things Not to Say to Someone With Autism
  3. BBC Three’s “Things Not to Say to an Autistic Person” video
  4. Lydia Brown’s article for The Mighty.
  5. Chris Bonnello- “Autistic Not Weird” blog posts:

You can also check out my post 12: Asperger’s or Autism? FAQ for more info on language and my preferences.

No need to read and watch all of these links above (unless you want to, in which case ALL THE BROWNIE POINTS!), but at least checking out some of these resources would mean a lot to any Autistic person you interact with.

Related: 29: When You Don’t Believe I’m Autistic

6: Why I’m Writing This Blog

If you’ve read the post on my homepage, you’ll have a pretty good idea of why I started this blog.

I have three main goals:

  1. To look back at my childhood and the years before diagnosis, see where I started to mask my Autistic traits and to mimic “normal” behavior, and find who I am authentically.
  2. To give people on the outside a look into an Autistic brain and life.
  3. To reach out to others like me who have gone (or still are) undiagnosed or misdiagnosed.

There’s another goal though. I’ve grown so much since I started to realize I might be on the Spectrum, and even more so since my official diagnosis. But it’s been pretty lonely. I’d love to connect with some fellow Autistics.

But I’d also like to more fully connect with my friends and family. Carrying around this secret has been really exhausting and isolating. I don’t feel like I have very many people that I can talk to about it all and that’s been frustrating and scary. I don’t feel ashamed or embarrassed about being Autistic and I don’t like feeling like I’m lying.

I also hope that sharing this blog with friends will help them understand my behaviors more. They’ll know why I sometimes wear ear plugs or make multiple trips to the bathroom at a restaurant (See: sensory overload). They’ll see how much energy goes into everything that I do. They’ll understand why I have to cancel plans sometimes even when I really, really want to see them.

I would love to talk about Autism openly!

If you are a family member, friend, or acquaintance, know that I don’t want you to tiptoe around me or my Autism. I don’t want you to feel uncomfortable or to treat me like I’m fragile. And I don’t want pity. I love to talk about Autism and being Autistic (it’s who I am and I love me!) and welcome dialogue when I have the energy. I only ask that you see my post on “What Not to Say” to an Autistic. It’s ok if you make mistakes (if you’re willing to learn), so don’t stress too much. Don’t feel like you need to walk on eggshells!

I won’t lie. I keep going back and forth about whether or not I should share this blog with anyone. It terrifies me sometimes. But it also excites me! And the thought of continuing to live with this secret and my masks is much more horrifying to me than being open and honest about who I am.