How cliché of me to tell you all I’m autistic right as
we enter into #AutismAwareness month.
But hey, this is my truth. And I’m ready to share it.
So yep, I’m autistic. Tada!
Now I know you’re all blown away and shocked and you’ll never look at me the same way! ahhhh lol JUUUUST kidding. Of course you won’t. UNLESS of course me being autistic isn’t what you pictured Autism to be. THAT makes me happy. This is why I’m sharing. (Well, partly.) I’m ready to join the hundreds of thousands of autistic voices in sharing what we know, who we are and what our life experiences are.
BEFORE YOU CONTINUE… Please do not respond to this post either here, on FB or on IG without FIRST reading the very bottom. Please see the section that talks about what to say and what not to say as helpful guides. While I am ready to be who I am and let everyone know that, this is also scary for me too as it has not always gone well in the past. So please understand that.
So let me begin with some questions you may have in the back of your mind right now…
Why have you waited?
I would imagine this would be my top question, too. It’s a good one. For me, I have a lot of anxiety over conflict. I also struggle a lot when someone doesn’t agree with me. Above all, I am afraid of my OWN intense emotions. I’m well aware at how emotionally charged this entire topic is and any time I tried dipping my toes into making it public, something would set me in a full blown meltdown spiral. I was definitely not ready yet.
However, it has now been 1.5 years since I first started down this road and I feel like I’m there. I feel free.
I can own my truth despite what anyone else thinks because at the end of the day? It’s not their truth. Does that mean it hurts less when someone disagrees with something thats not up for debate about who I am? No, it still hurts a lot.
The difference though between now and 1.5 years ago is I have learned to not take it as personally. Society and the way everything is structured makes it difficult for a lot of people to understand. There is a LOT of complicated factors mixed in here so its not as simple as blaming society. Don’t hear me wrong.
Have you been diagnosed by a professional?
Nope. Now I know this is a hard one for many to understand. So let’s turn things around. If the world was mostly comprised of Autisitcs and other neurodiverse (ND) folk, and let’s say you’re allistic (non-autistic; neurotypical – NT)… that means you would only be allowed to say you’re NT bc an autistic therapist observed you for an hour or two in a room and graded you based off a scale that an autistic group of people created and said “ok you are / you are not autistic like us.” Wouldn’t you think you could determine that for yourself? Even this isn’t a perfect example because some would still prefer that to a self-dx (dx = diagnosis) and you know what? That is okay too! Just so long as you understand that a self-dx is just as every bit valid as a medical diagnosis.
Another thing most people don’t realize is how hard it is for an adult to get an autistic dx. A lot of psychiatrists only diagnose children.
Why are adults harder to dx?
– Adults have their entire life to learn how to mask and learn how to appear NT therefore it might be hard to recognize the traits.
– A lot of psychiatrists are NT and don’t recognize what autism looks like in adults. They make a lot of gaslighting claims that “you cant be autistic bc you do (or don’t do) this or that.” Again that tends to either lean towards masking all their life OR the psychiatrist just doesn’t fully understand autism, especially in adults.
So if self-diagnosing is valid, why do people get a professional diagnosis?
This is a bit loaded but in short, here’s a couple reasons.
- Some people have a lot of trauma that makes them feel any decision they make could not possibly be right. So they do not trust themselves to make any sort of self dx like that.
- If you want to get on disability (as Autism is considered a disability by definition) you have to have a medical professional dx you.
You mentioned Autism being a disability?
I only mention this right now in order to let you know I will be talking about this in the future but I’m not ready yet to touch on this. Stay tuned.
How should I respond to this?
Let’s make it simple:
Things not to say:
- We are all a little autistic. (we are not. We may share similar traits that are indeed included in autism but that doesn’t make you autistic. There are certain amounts of traits combined and the way they affect your life that make this a dx.)
- You don’t look autistic. (you do not look neurotypical. This is not an actual thing. No one can look autistic. No one can look neurotypical.)
- But you can work and have kids (yes and some can’t. Just like some NT folks can work and some have reasons they can’t. There is way more to this one that I will go into at another point.)
- Using the phrase “have autism” (majority of autistics prefer to be called autistic. I will touch on this later but person first language (PFL) such as “Sarah has Autism” is not preferred by the Autistic Community as a whole. Not all feel this way but the majority do.)
OK so what SHOULD I say?
- That’s great!
- Congrats on learning this about yourself!
- I’m so happy for you!
- I know society still has a long way to go in understanding. If you ever need a safe person to talk to, I’m all ears.
- Where can I learn more about autism?
- Or if you don’t understand and don’t feel like you have anything positive to say, please just don’t say anything. Thats honestly the best you can do for me and others.
*** DO NOT use Autism Speaks as a resource. They are awful. ***
- This video is INCREDIBLE. If you listen to, watch, or read any info on autism today, let it be this video. It’s not too long.
3. Click on the link below the file or scroll within the file. This contains an incredible amount of resources!
5 thoughts on “Autism and Me”
There’s so much in this post I appreciate immensely, but I wanted to comment on the video specifically. Thank you for sharing that! It’s helped me perspective better in ways that will guide my own research and my having empathy with myself in these communication mismatch scenarios I frequently encounter. Thinking of this as a mismatch instead of a personal failure feels like such a relief. Also … more accurate. Phew.
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I can’t tell you how much it means to me that you commented this! What a wonderful thing to wake up to, thank you.
I’m overjoyed that my post could touch even one person. It took me a while to have the courage to post this and when I did hit “publish” I felt sick to my stomach (yet optimistic, too.) Autistics get attacked all the time. I’m a moderator on an autistic FB page and it’s so sad how much pain we as autistics endure simply bc others don’t understand.
When I watched that video, I was just shocked. It was such an incredible video. I will be sharing it again, I will also be writing out what she said so that it’s in writing too. It’s worth the time for that. ♥️
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Sorry it’s taken me so long to reply! The travel did a number on me, so that I can barely find words days after returning. (I have maybe an hour first thing in the morning, gah.) Through the silence: This post, the video, and your comment have touched and continue to touch me. I find it likely I’ll link to this post (if you’re OK with it) or the video (if preferred) when I actually name my neurodivergence as autism a couple weeks out. ❤️
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I’m so frustrated I’m seeing this SO LATE. I’m so sorry I wish I’d seen this sooner!
YES I would *love* for you to reference my post! Anytime – any post! I want my posts to help someone, anyone, if it has a place for that.
I am so beyond words. Thank you for sharing this with me. I’m so grateful.
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I’m kinda grateful you’re seeing this late! I drafted a huge chunk of a long post naming autism last night, but then hit this wall of: “There’s something missing here?” I couldn’t figure out what, but the video (and then some) get right at the heart of it.
Right now, I am currently often frustrated by these communication mismatches that (I think) are read as me being obstinate or unwilling. It’s not that at all! It’s just that I literally just think differently.
To be reminded of this video (and post!) right now is a real gift. It’s not about me alone, though it can feel that way being autistic in an allistic world, but rather … the fit. PHEW.