a blog by an autistic adult

Anxiety when technology breaks (and other ways I spent my day yesterday)

I guess since I commented about my meltdown triggers yesterday morning, all the Murphy’s Law gods were inspired to conspire against me and give me a meltdown for the rest of the day.  So, a little backstory for anyone who might not know me that well.

I kind of am annoyed that there’s the whole myth/stereotype about autism and technology that all autistic people have to be strapped into our video games 24/7 or we whither away and die. This is a shit stereotype for all of us, since I do have autistic friends who take a lot of crap for their gaming hobbies and so on. There are a few games I’ve liked over the years, but I’m not really a gamer.

I’m more one of those people who relies on technology for communication and to work, since I work from home and everything I do for my job requires me to either be on my phone or laptop. I need access to the internet to be able to do other things too, such as pay my bills and deposit my paychecks and buy my groceries and get refills of my family’s medications etc. I have unlimited data on my phone, no wifi at home, and limited data on my laptop, so I use my phone for most non-work tasks that don’t require a computer. And I also use social networking etc for fun and to talk with my friends online, which is one of the few things that makes me happy some days when I’m completely stressed out.

So yesterday my problems started with messenger.  Everything was super slow to load, and then my phone started crashing. I reinstalled the app, turned my phone on and off, did a bunch of other things that were suggested to me, and nothing worked. Then my phone started crashing every few minutes, and at one point shut off completely. I started to have a panic attack which I legit thought was a heart attack because it felt a lot worse than my usual anxiety stuff. And my phone wouldn’t turn back on, so then I thought “Ok yay irony that I’m having a heart attack and now I can’t call 911 because my phone is broken.” So it wasn’t a heart attack, but by the time I realized this I was in a full meltdown that didn’t go very well for me physically lets just say. Then as a bonus, when I informed a family member why I was upset and had to cancel a thing I’d planned to do, they made a joke about “oh no what will do you do without gaming for a minute” and then a dismissive comment about “oh autistics and technology addictions.” So that really didn’t help.

I got my phone working again but couldn’t get it to stay working with messenger installed, which threw me into a separate panic of how am I going to talk to the few people I regularly talk to on there who are really important to me. I worked it out but that was hard and I’m  still kind of going through messenger withdrawal to be honest. I guess the good thing that came out of this is that since I couldn’t spend my time doing the things I needed and wanted to do, I actually cleaned my bathroom. Yay?

So today I woke up and my phone is still really slow and I’m starting to feel the panic back, although not as badly as yesterday. But knowing that my phone is probably not going to last much longer is kind of a big deal for me since I rely on it so heavily for pretty much everything and really can’t afford a new phone right now. Anyway,  that’s what’s new with me. And if you usually chat with me on Facebook messenger, just know I’m likely not going to be doing that today sorry. I’m also not going to be checking FB as much as I usually do because I’ll have to be at my computer to do that now without risking my phone dying. :-\


My autistic meltdown triggers and answers to other meltdown-related questions I keep getting

First off I would like to apologize that I’ve been super behind in monitoring/approving comments here and responding to people who have contacted me by email recently as I’ve been dealing with a bunch of stressful stuff and executive dysfunction is kind of taking over my life to be honest. Probably the most frequent questions I get asked through this blog, especially by parents of autistic kids, revolve around meltdowns. For example: what are my meltdown triggers, how to deal with an autistic meltdown, and what to do when your autistic child has a meltdown. I finally decided I will post about this so that when people ask me in the future I can just link them back to this post instead of typing out a reply each time. I don’t have children but as an autistic adult, I remember what it was like being an autistic child, so really all I have to offer on this topic is my own experience. Keeping that in mind, here is my answer. Maybe some other autistic people will respond in the comments also.

For anyone who isn’t that familiar with autism, meltdowns are different for everyone and what each autistic person needs during and after a meltdown will be different and may change depending on the day or situation. For example, one of my friends likes to have someone lay on her when she’s having a meltdown. If someone laid on me while I was having a meltdown at this point in my life, I would probably hit them and scream at the top of my lungs. Another friend of mine likes to be talked to and reassured during his meltdowns, while I really need complete silence or my meltdown will escalate until I’m injuring myself. So it’s kind of hard to answer a question like “how do I help my child during an autism meltdown?” when I don’t know your child or what they are like.

Personally I try to keep tabs on what triggers a meltdown for me so that I can try to calm myself down and regroup before I reach a full on meltdown. The big difference between now and being a kid is that as an adult I have more control over my environment, so it’s a bit easier for me to manage my triggers at least a lot of the time.

As a child, my meltdown triggers usually had to do with too much overstimulation and then people around me reacting badly to the way I handled that. For example, as a school kid in a brightly lit and noisy classroom I was always overwhelmed. People were always talking and moving around, which made it hard for me to try to concentrate. I usually felt like my brain was on fire and I often had trouble understanding and processing what was going on because of this. I was basically always overstimulated to the max, and anything more that happened was like the straw that broke the camel’s back and could lead to a meltdown. Like if the teacher asked me a question and I didn’t respond right away, and then someone laughed at me, I might have a meltdown. In this situation, the immediate trigger was someone laughing at me, but if I had not already been so overwhelmed and overstimulated then the laughter itself probably would not have triggered a meltdown. So the real trigger was the constant overstimulation.

When thinking about what is triggering my meltdowns, even now, it is not always so easy to determine a specific trigger. I work to prevent myself getting overstimulated by bright lights and a lot of noise as much as that is realistically possible, because those things put me on edge and are the ultimate meltdown triggers in that the next little unexpected thing could be too much for me to process.

In general, I know that some things will almost always have the potential to trigger a meltdown for me even if I’m not already overwhelmed or overstimulated by my environment. For me these triggers include being yelled at (or even someone yelling around me, even if they’re not directing their yelling at me per se), having people get too physically close to me if I don’t want them to, certain types of loud noises and noises that startle me (such as barking dogs or people coughing/crying loudly or loud machinery), unexpected changes that are outside of my control (like my landlord showing up unannounced or me getting sick and being unable to do my usual activities), and certain strong smells. As much as I would like to be able to avoid all of these triggers, sometimes life doesn’t cooperate. I try to manage my environment and prevent sensory overload as best I can, for example by wearing sunglasses or wearing headphones, or by trying not to schedule more than I can handle in a single day. That’s really the best I can do most of the time.

Once I’m to the point of a meltdown, for me, it’s kind of too late for anyone to do anything to help aside from leaving me alone. In my situation, my meltdown will run its course and be over a lot faster if people step back and don’t try to talk to me or touch me. As I said before, this is not everyone’s preference as we all have different needs. And I understand that if a child is hurting themselves or something like that during a meltdown that intervention might be necessary. However, I can only respond as to my own experience so it is what it is.

The best advice I can offer parents who ask me these types of questions is to listen to your child about what they need, if they are able to communicate that information. And realize that they might seem fine before the meltdown when actually they have been overstimulated and stressed for hours prior, and that the seemingly small trigger was actually just the final drop in the bucket before the water overflowed.

Sorry for any typos or if something doesn’t make sense. I’m super tired right now.

My autistic memory only remembers useless information, sorry.

Sometimes I have to laugh when people are like “Oh, you’re autistic? You must have a great memory.” And I’m like “Well, sometimes……” Then they mention something like “Oh you know how that autistic artist Stephen Wiltshire draws NYC from memory” and I’m like “Oh ok, yeah, that’s super cool. But I’m not like that. My so-called autistic memory is more about remembering every 90s tv show theme song, commercials from the 80s, and my locker combinations from high school. Sorry to disappoint you.”

I also realized the other day that I still remember every phone extension from my receptionist job back in 1997. And that this awesomely autistic photographic memory everyone thinks I’m supposed to have is kind of humorous, because I can still remember which part of the page of my history textbook the answer to a test I failed in 1990 was on but I can’t remember the answer now either.

This yesterday morning I was trying to remember where I put my hairbrush, and my brain reminded me that I used to play the Cheers theme song on piano when I was 10. So I’ve got that going for me. Haha.

So this just sort of got me to wondering, what random but potentially useless things do you still remember? Tell me I’m not alone lol

Executive Dysfunction, Autism and Anxiety

Yesterday while looking through my desk for a tax form I’m pretty sure I lost four months ago, I came across a stack of unopened mail from February. I stared at the unopened envelopes for somewhere between a few minutes and an hour, playing the mental game of doom that I play in my head every time I see a piece of mail that might require some sort of action on my part. Opening mail is really hard for me, not because I struggle to physically open the envelope but because of the overwhelming sense of dread I have associated with mail.

Will this mail ask me for money I don’t have? What if this mail is a collection notice about a bill I forgot to pay in 2012? If I don’t pay the money, what will happen? If I pay the money, will I later regret using this money to pay that thing because I could have used the money for some other more important necessity? What if the mail asks me to fill out a form? What if the questions the form ask are confusing and I end up having to call someone for clarification? What if my returned form gets lost in the mail? How will I mail this when I can’t remember where my stamps are? What if this mail ruins my life?

All kinds of thoughts like these and more run through my head at approximately 500 miles per hour every time I see I have mail. Saying that mail gives me anxiety is probably a major understatement. And my anxiety sucks badly. Because the possibilities of what’s in the mail will run through my head while I’m trying to sleep at night, every night, until I eventually forget that the mail is still in my desk unopened.

The obvious question running through your head right now might be “Wouldn’t it be easier to just open the mail and deal with it as it arrives?” I have asked myself this question many times and the answer is probably yes. But the answer is also no.

Because my anxiety leads to such bad executive dysfunction that I can’t logically process anything or do the thing that needs to be done. But most people don’t see my invisible struggle. All most people see is the pile of unopened mail from February and think “Wow, this person is lazy.” I’ve thought it of myself, too.

I recently realized that I’ve spent more than 30 years mistaking my executive dysfunction for laziness. Mostly because when I was young, the adults in my life assumed I was lazy and told me so. As a kid, it didn’t take me long to internalize this. Those adult voices became my inner voice on the subject. I remember at 9 years old I would yell at myself for being lazy. I still catch myself doing that today, even though I now know that executive dysfunction and autism and anxiety go hand in hand for me.

Internalized ableism for me is like an old skin I’ve outgrown but can’t ever seem to fully shed.

Internally I still beat myself up over something that isn’t my fault. I’m not actually lazy. Most autistic people aren’t actually lazy, in my honest opinion; we just have these invisible struggles that we can’t talk about without someone calling us lazy.

I’ve had people, especially parents of autistic kids, ask me if executive dysfunction in autism is a thing all of us experience. Judging solely based on myself and the other autistic adults I know, executive functioning difficulties are common but that doesn’t mean that all autistic people experience executive dysfunction or that we all experience the same struggles in the same way. I can really only speak for my own experience.

My executive dysfunction status changes day to day, based on a variety of factors such as how overwhelmed I am. Some days I feel super functional and can do my own taxes. Yesterday, I opened my mail from February. Today, I stood in the shower wondering whether I just washed my hair or not and ended up with only one armpit shaved.

Since we’re all supposed to be raising awareness or acceptance or whatever, today I’m going to share a personal story and some rambling thoughts about communication and abuse and ableism. Yay!

I was diagnosed with a hearing loss at age 16, in 1995, when someone could finally afford to take me to an audiologist. When I was told I would probably lose more hearing and might become completely deaf at some point, I decided I wanted to learn sign language. At that time I didn’t know any Deaf people or know anything about Deaf culture except for what I had seen on Sesame Street as a kid. Learning sign language just seemed like the practical thing for me to do. I looked around and found out that a local church offered free classes. The instructor was hearing but was an adult child of Deaf parents. What I most remember about that first class was when she asked how many of us were there because we had Deaf children. One woman raised her hand. The instructor praised her over and over for learning to communicate with her child and began talking about how statistically so many parents of Deaf children don’t do that and force their kids to learn to orally communicate instead. I broke down crying and had to walk outside to compose myself because I wanted to die just thinking about that. I was so upset at the thought that parents would force their kids who can’t hear to try to verbally talk and not be willing to learn to sign to communicate with their child. I couldn’t understand why.

I thought about my elementary school years of being in speech therapy, which I was forced by the school to attend because they decided I had a speech problem but somehow didn’t pick up on the fact that my speech problem was caused by me not being able to hear properly. Speech therapy for me felt like torture and resulted in so many meltdowns that even though no one had diagnosed me as autistic, the speech therapist eventually called a meeting with my mother and the principal to discuss the fact that I was behaving like I was “emotionally disturbed” and making people uncomfortable. My mom somehow got me out of speech therapy not because she didn’t want me to be treated like that, but because she said she couldn’t afford to have to miss work for school meetings and was afraid they would end up reporting her to someone who would take me away from her.

I was diagnosed as autistic at age 30. I’m both unhappy and happy about that. In a way, I wish I had known sooner that I was autistic because maybe I would have felt less shitty about myself for the autistic things I did all my life. But also, I’ve read pages of other autistic people my age who were diagnosed as kids and were tortured with abusive therapies for years and I think nah I’m good. I don’t think I could have survived my childhood being abused any more than I already was. But being diagnosed later, I found myself sort of reliving that experience of when I took my first sign language class.

At age 30, I didn’t know anything about autistic culture and didn’t know very many autistic adults. I came online to try to make friends and felt like I was having flashbacks of my experience at age 16 when I first learned that there are parents who would rather force their kids who can’t hear to try to speak orally to fit in with society than learn to communicate with their kids in a way that their kids were capable of doing. Only it wasn’t 1995 anymore. Now there’s youtube and facebook and other places for people to record videos of their kids’ meltdowns for the whole world to see. There are also communication devices that kids like me wouldn’t have been able to afford. The one thing that hasn’t seemed to change is how much parents want their kids to try to “fit in” and function in ways that are just never going to happen or are going to be super traumatizing to the kids. I understand why more now than I did at age 16, but it still makes me want to cry a lot of the time.

I’ve seen a lot of parents of autistic children post things like “I’m sad that I might never hear my child say they love me” or “I was so happy when my child finally learned to talk so they could say they love me.” I can’t really put into words how upsetting that is to me. I can’t imagine how their child might feel to read that someday. It’s upsetting to me that there are still people in 2018 who don’t think other communication is just as valid as speaking.

Ableism sucks. People shouldn’t be made to feel like they’re broken because they can’t do something the way society wants them to do it. A lot of the autism awareness and acceptance things I read feel like what they’re saying is “Let’s make the world be able to better recognize that you’re broken so we can fix you faster” or “I love my children even though I think they’re broken. We’re working on fixing them every day, and it’s so hard, but I love them so much.” And the world praises the people who say these things while telling the rest of us to shut up, because we are the broken ones who couldn’t possibly understand what those parents go through to raise broken people like us. Maybe that’s not what they mean, but that’s what it sounds like. And when you grow up hearing that over and over, you’re being trained to believe it’s true. So much so that even at age 38, I’m not sure I’ll ever unlearn all the internalized ableism I’ve been taught by a society that was “only trying to help.”

Every year since I’ve been on facebook I’ve had people ask me why I don’t post more about awareness and acceptance. So here you go. I’m guessing this isn’t what most people want to read, because it doesn’t make anybody feel good, but this is all I have for today.

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