Stick to the rules

Another quick lesson for you guys. When you have rules, stick to them. I have a “No flame wars” rule for online interactions. Some of the hardest ones I have are actually with fellow autism activists. It’s not often, but I see people laying into parents who are just uninformed and need someone being kind to them to help them understand what it is to be autistic, and that injustice rage starts to boil. I can’t stand bullies, even when they are technically in my own advocacy group.

I saw one such parent, tried to help her. Tried to be kind to the other advocates. They kept picking at me, then finally accused me of being a child abuser, and my conflict anxiety boiled over and I hit a wall in my attempts to communicate.

First, I threw up. Next, I started bawling. Then my hands went numb, and I lost all ability to speak. I tried to message my counselor but I couldn’t see because I was about to pass out from hyperventilation.

This is called a meltdown.

Lights became painful, noise became unbearable, the world closed in on me and I could feel everything. I made my way slowly to my pills in my medicine cabinet, and took a klonopin (my doctor calls them emergency emotional pain pills.) Slowly, I went back to something more like “normal.”

I wrote down what was happening to my husband (remember, I had lost all ability to speak. That lasts a little while.) And he suggested that I give facebook a rest for the night. I agreed.

This is all physical. I perfectly understand the perspective of those advocates. I understand why they feel the way they feel and I am compassionate to their cause. But they so needlessly pushed a person that they claimed to be supporting into a meltdown by bullying and refusing to listen.

Now, having said that, my meltdown is still not on them. I have to use the tools that I have learned to try and regulate my emotions so that doesn’t happen. I made two big mistakes in my estimation.

#1. I’m sick. I shouldn’t have tried to make any kind of controversial fight while I’m sick, especially with something as rough as COVID-19. And as controversial as ABA therapy.

#2. I can’t control what other people do, only how I respond to them. I wasn’t going to change those women. After all, no matter how clumsy it was, they thought they were doing righteous work. They thought they were educating me, despite my already extensive knowledge on the subject. And there is merit to the argument that ABA is harmful. They weren’t doing a great job being persuasive, or kind, but at least they weren’t peddling nonsense.

I have to respect my own boundaries. I don’t have the privilege of being careless with my anger, because it will destroy me. That is apart of being the kind of person that I am. Autism has wonderful strengths, but it also comes with rigid constraints and repercussions.

Like meltdowns.

Mostly, I’m just worried about the fever my husband just spiked. I don’t know what we’ll do if we both have coronavirus at the same time. Our sweet four year old won’t understand why his Mommy and Daddy can’t hold him. And no one else can come to our aid with the quarantine in effect.

It won’t matter if I made my point to strangers then, because he still won’t understand.

The point I’m making to you, reader, is we like rules for a reason. Stick to the rules. And be kind. Please, be kind.

That and don’t let the only healthy caretaker of your child too close to you, even if he is your husband. Stick to the rules.

Sensory Meltdown


Hyperosmia, misophonia, and photophobia… No, photophobia is not being afraid of having your picture taken. That is technically Scopophobia, or the fear of being seen. Like most people that have had problems with their self image in the past, I can understand that one too. But that’s not what this is about.

Hyperosmia, misophonia, and photophobia.. (oh my!) …are respective sensitives to smell, noise, and light. Or in the world of some autistic people, just having a nose, ears, and eyes. These sensitivities can trigger stress, or be the result of stress, whatever makes it happen, it is something that we deal with every day.

So how do I do it? It requires tools, accommodations, and occasionally, trickery, but I do it everyday.

Here’s how…

So I wrote this piece a few weeks or so ago, at the beginning of quarantine. And while everything that I was going to tell you was true.. what I am about to tell you is also true… And it’s happening now…

Hyperosmia, misophonia, and photophobia, collectively, really just mean that you are very sensitive to the world around you. And at times of stress, it can also mean that your senses will turn on you.

What’s more stressful than a global pandemic where millions might die? Apparently, living with my sweet little family.

The little prince is home from his school. He doesn’t understand why his entire routine is just suddenly gone and he is acting up because of it. We’re also trying to potty train, something that is difficult with neurotypical children, let alone autistic children affected by large and unknowable current events.

Typically, I use the time he is at school to clean up, reset my house. Deal with all the mayhem that he inflicted the night before. Find where he hid the can opener this time, pick up all the shirts that he threw on the floor to steal the hangers from- put away all the silverware that he took from the LOCKED drawers around 3 am while we were sleeping.

This may sound like I am a neat freak. I’m really not. I’ve lived most of my life as a messy person. But as I’ve gotten older and my responsibilities have grown larger, my need to control my environment has multiplied exponentially.

So, as you can imagine, with quarantine, I haven’t been able to control my environment. The can opener is lost. All the shirts are either dirty or on the floor, hangers or not. And the silverware… my god, most of the silverware is with the dirty dishes. Reeking in the sink.

Then I also happen to be married to an autistic man, who has trouble with any kind of change to his routine, or his needs. He is not selfish. He just has trouble with this. Like millions of other people, let alone autistic people, he has trouble adjusting. So I can’t ask him to pick up the slack as I might be able to in a typical marriage.

And now…. Now I am sick with the virus. It’s not as deadly a case as it has been for others, but it is extremely painful at times, not to mention isolating.

So as you can imagine, my world and my mind are melting down.

What did I do to stop it?

Well, first I tried having a session with my online counselor that I see through I have received so much help from this online modality of therapy. This particular counselor has helped me a lot with the practical side of regulating my emotions. BUT when it comes to autistic traits, he just wasn’t helping. He kept harping on the fact that I needed to be more assertive with my husband. Anyone who is autistic will tell you that someone being more “assertive” with you is not going to be some kind of wake up call. It’s going to be a trigger for more stress. I tried to follow his advice, but it only resulted in more emotional turmoil, for both me and my family. (I want to say something more about therapy here, but that deserves a whole different post. So stay tuned for that.)

Anyway, that didn’t work. So I flipped out. Not at anyone per say, no, I just went to my computer- cried really hard- and then started writing. Stream of consciousness, painful, emotionally volatile stuff that I blamed on my counselor, my husband, my autism, EVERYTHING. I typed so hard that I damaged my keyboard. Then, when I was done, I erased it.

This is the literal definition of catharsis. I had to get those feelings out or I was going to lose it on someone I cared about, most likely my husband, if not myself. And you can lose it on yourself. You can do a lot of damage to yourself.

I watched some ASMR to cool down, my favorite GIBI Affirmation video. And then I got some sleep. This helped.

Then, as I said before, I started to get sick. While I am 99% positive this is COVID-19, my doctor asked me NOT to come in for a test because of the rationing of medical interventions and supplies. He told me it sounded like it was potentially corona and to call immediately if it got worse. This was not great when it comes to my need for rules and certainty, but my enormous want to be helpful i.e. not infect other people, satiated the not knowing. At least enough to follow my doctor’s orders. Orders are close enough to rules to shore up the uncertainty.

But being sick didn’t help my environmental concerns. The dishes and the garbage still smell, the can opener is still missing, and the ice maker is making a horrible, horrible sound.

So, seriously, what do I do now? My environment is only getting worse, so my sensory issues are only getting worse. What do I do?

Part of me had to shut down. The part that can’t handle sounds and smells, that had to shut down a bit. The way I see it, I’m practicing desensitization by letting things go. If it gets too bad, I do use some of my tools and tricks to get through it, like lighting candles or listening to ASMR. But it’s important to try and stretch your abilities from time to time (that’s a tip from Temple Grandin by the way.)

And my husband did have to step in, because when it really matters, he too can overcome his issues to help the ones he loves. It’s hard for him, and he has experienced some burnout from the near constant demands of his wife and our extra clingy kiddo.

But we’re making it through.

Honestly, as soon as I am better, I am going to do my best to reset this house, even under the restraints of quarantine. And I will use every trick at my disposal to get there, until then, I’m letting it go. And getting some rest.

That’s the most important thing I can tell you- just let go. Occasionally, the world is going to be too much and you won’t be able to control it. All you can control is how you respond to it. Use all your accommodations and tricks to mitigate it the best you can…

…then let go.