I’m feeling very autistic today

I had mentioned on an entry two days ago about how I’m was still having problems adjusting to my medication change. Well, problems continue apace. I’m spending like sixteen hours a day asleep, and the other eight either half-asleep or wishing I was asleep. I’ve just gotta wait until I get used to it (again).

On a related note: I was formally diagnosed with autism in 2008, just after before I turned twenty-three, although several people in a position to know what they were talking about had suggested it before. I’ve improved a lot since then with the help of medication and therapy and so on, and some days it’s like I don’t have it — I can’t tell I have it, and other people can’t either.

But not all days. The last two days I’ve been feeling exceptionally autistic and I’m not sure why. The best I can guess is because I was off my medications last week. The very reason my psychiatrist increased that one medication that’s now making me tired is because he says it’s good for preventing meltdowns.

I posted something on my personal Facebook page about all this, and I thought I’d share (most of) it with you, for educational purposes. I’ve actually added a few details to this blog that weren’t on the FB post.

Although autism has become much more well-known over the last few decades and it’s by no means rare, a lot of people still don’t know much about it. So, some people might learn something from this entry. Anyway:

When I say I’m “feeling autistic” I mean this: I was diagnosed with high-functioning autism nine years ago. Some days other people, and me too, can barely notice that that there’s anything wrong. Not today. Not yesterday either.
I feel really autistic today, and last night too. Been stimming much of the time, unable to tolerate the slightest frustration, freaking out at noises, afraid to try anything, incredible anxiety, hyperventilating, etc.
I’ve had two meltdowns in two days. Fortunately I was alone both times. My meltdowns are incredibly embarrassing to me, especially if other people see them, even my nearest and dearest. I am incredibly ashamed of my behavior because I will act like a toddler: screaming, crying, throwing myself against walls, even throwing objects and, on rare occasions, doing harm to myself. It’s very concerning to people who don’t know what’s going on, and very annoying to people who do know what’s going on.
I genuinely cannot help myself. And afterwards it feels like a storm that passed through, or as if it happened to someone else and not me.
As far as I know are only three ways for laypersons to stop one of my meltdowns:
1. Fix whatever problem caused the meltdown in the first place. For example, a big meltdown trigger is when I can’t find something. If that something is found, I calm down quickly. Same with noise — a noise that’s loud enough and in the right pitch and lasts long enough will trigger a meltdown, but I will instantly relax once the noise stops.
2. Distract me with some totally unrelated thing. L. headed off the start of a meltdown in a restaurant once. They always begin very rapidly. and within like two minutes I was slamming myself back and forth between the booth and table, over and over, hyperventilating, barely able to talk and definitely unable to listen. And so L. deployed the unstoppable weapon of…cat pictures. I mean, one minute she was like “please calm down, people are staring at us, they might throw us out” and the next she whipped out her phone and showed me pictures of her cats and started talking about them, their names and the toys they played with and stuff. I stopped thinking about whatever it was that was upsetting me (I don’t even remember what it was) and relaxed and we began a conversation about cats. This was a great idea on L.’s part, very clever, all the more so as she had no prior experience with my meltdowns.
3. Ignore it and wait for the meltdown to burn itself out. This is better than saying “stop that” over and over, because I CAN’T stop and it just exacerbates the problem when someone keeps asking me to do something I cannot do. But the whole “waiting” thing isn’t that great an idea because, without intervention, these episodes can last an hour or more, and I can really hurt myself and/or damage property.
Autism sucks.

Ed Dentzel’s podcast with the interview for me has gone up. I’m reluctant to link to it on my blog, though, until I’ve listened to the whole thing. (Stupid, I know. It’s not like I don’t know what I said.) So far I’ve listened to about 45 minutes of it. I hope to finish tonight. It’s great so far, although it doesn’t tell much that longtime readers of this blog wouldn’t already know.

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7 thoughts on “I’m feeling very autistic today

  1. Shari Kizziar October 27, 2016 / 8:54 pm

    I am a faithful reader of your blogs. I didn’t know you had autism and thanks for educating us about it. I think you are incredible by the way!

    • Meaghan October 27, 2016 / 9:33 pm

      If I didn’t have autism the Charley Project probably wouldn’t exist.

  2. Liz October 27, 2016 / 9:01 pm

    I’m so sorry I know how crazy meltdowns canbe to experience and to witness. My kids have some similar issues and we are even looming at a diagnosis that is legit in England but not here in the US with the DSM,.called. Patjogical Demand Avoidance. Meltdowns are just the worst. And then afterwards there are all those emotions of shame, guilt, embarrassment, etc. Sorry. I hope you are feeling better soon!!

  3. Kat October 27, 2016 / 9:24 pm

    Really OT,and I apologize, especially for what you are facing, don’t even know if this guy is on here but it bears repeating………..

    http://www.dailymail.co.uk/news/article-3879736/Married-father-disappeared-23-years-ago-family-home-living-different-state-entire-new-family-relatives-dead-man-stole-track-ancestry-com.html

    I did not get to comment on your previous article about how people like this make me sick, when so many missing wanted to get home. There;s one case that sticks in my mind but there is time for that later. Glad they found this guy, sorry for those suffering the consequences.

  4. Laura October 27, 2016 / 9:26 pm

    My daughter has Tourettes, OCD, and general anxiety. She has anxiety attacks that sound very similar to your meltdowns. I am in a couple groups and it seems this time of year is when it escalates. Maybe it has something to do with the time change.

  5. diamondlil16 October 28, 2016 / 1:11 am

    Wow, that is scary. For you, and for those around you, or at least those that wouldn’t know what was happening. Do you carry some sort of medical card on you to show police if you were to get pulled over? Is there anything you can use for self-soothing to counter balance the self-stimulation when you don’t have a friend nearby? I hope it won’t be much longer for that medicine to level off for you.

    • Meaghan October 28, 2016 / 11:30 am

      I actually had a severe meltdown last summer after a minor car accident. I was able to communicate to the police officer that I was autistic. He wasn’t sure what to do so he called my dad on my phone — as you can imagine it gave Dad a bit of a start to get a call from the cops on his daughter’s cell phone. Then the officer was like “Please sit in the back of my car. Not cause you’re in trouble but because it’s very hot and I don’t want you to overheat.” So we sat in the patrol car together till Dad showed up.

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