Too Scared to do What I Want

Today, I something pretty huge happened. You see, I’m traveling in Europe and attending a conference.  At the conference, another attendee offered to take a group of people on a walking tour of this city (they know the city well) the day after the conference – just “come up to me after the session and we can exchange contact information” if you want to go.

I started shaking. I really wanted to go – it sounds like a really fun way of seeing the city, and doing it with someone who actually knows the city is even more exciting. It’ll give me a chance to see things and talk to some of the attendees at the conference who, no doubt, are interested in many of the same things I am interested in. And it’s hard to meet up with people.

But I was shaking.

Would I recognize this person in 10 minutes? Almost certainly, no.

Would I be able to go up to them and tell them I’m interested? Again, no way.

But I really wanted to.

Yet I was terrified.

When you’re an autistic kid, particularly if you don’t fit into the clique of other boys at all, life is pretty horrifying – and that leaves scars. It leaves a scar that makes it hard to go up to people and say, “Yes, I WANT SOMETHING!”  You learn that your interests are wrong, that you aren’t cool enough to hang around with other people, and, if by some miracle they let you come along, that’s only because they plan on doing something awful to you away from the prying eyes of an adult. Maybe they’ll steal your money. Or hit you with something. Or violate your body. Or hide, waiting for you to show up and find nobody there, while they laugh at the dumb boy. Or leave you somewhere. Or tell you that they are doing something illegal – and convince you to join in it, only to find out it’s a setup for which you take the blame because the “good kids” turn you in.  But whatever happens isn’t going to be that something you want.

But I’m nearly 40. These things won’t happen. The people making this offer want people like me to come, or they wouldn’t have offered. I know all of this.

But I’m shaking. I’m terrified.

And I’m not going to recognize this person after the session anyhow.  I can’t just go around to 300 attendees and say “Hey, are you the person that talked about X?” And I certainly can’t ask anyone to point them out to me – then I have to overcome this twice.

It makes you want to cry. Why can’t I have the smallest amount of confidence?

Because I’m terrified. It’s not logical, it’s deep in the heart.

This time, the person making the offer was distinctive enough looking that somehow I was able to find them – they look (to me) just like their partner (same gender, same age, same basic body type, same hair color), so I have a 50/50 shot. And I risked it.

I was shaking.

What kept coming to me was a quote, from a different context, about activism: “Speak your mind–even when your voice shakes.”

I can do that when someone else needs me to. Mess with my family and you’ll find that out – there is nobody I can’t go up to and set straight when they’ve wronged someone I love. Or when someone I love just would be happy if I did.

But asking for something about me–that’s different. That’s hard. And it’s not something I need, I’m not advocating for rights. I am just saying, “Yes, Joel wants something.” But isn’t this, too, advocacy? Aren’t I a person worthy of happiness and joy, and needing someone to speak?

I was terrified.

Somehow, when I found that person.  And I gently tried–and failed to get their attention.  I wasn’t positive of their name, so I didn’t want to use the name, but I couldn’t get their attention either.

I was shaking.

I just about gave up.

Someone else saw me and said to the person I was trying to talk to, “Hey, someone’s trying to get your attention!”

More shaking. More terror.

But I did it. I spoke, with my shaking voice. “Are you the person organizing the walking tour?”

Terror.

Shaking.

“Yes, are you wanting to go?”

Terror.

Shaking.

But I somehow found the voice to say yes.

Tomorrow, when I meet up for the tour, will be another bit of stress and terror. I have to find someone tomorrow, in a building I’ve never been to before (another thing that terrifies me).  I’m terrified.

But I’m also excited. And proud. And happy. Filled with anticipation of doing something I want to doBecause I want to do it. Not for someone else. Not pretending I am not interested, lest I be humiliated by finding out I wasn’t really allowed to do this. No, it’s wonderful!

So, tomorrow, that’s what I’m doing.

And I’m terrified.

And shaking.

But the shaking is just as much excitement as it is terror. And probably the cold temperature in this room.

I Will Remember

Today is a day of mourning for disabled victims of murder.

I will remember.

I will remember those who lost the battle for existence…
…those who were killed by parents, caregivers, or others
…those who were killed by bullies that pretend to be friends
…those who were killed by taking their own life after years of abuse, harassment, and prejudice.

I will remember.

I will remember those who are still with us…
…who bear the wounds of abuse and prejudice
…who receive little, if any, support
…who were told they are “less-than.”

I will remember.

I will remember for myself…
…that my interests are precious
…that my way of participating is valid
…that my uniqueness is important in the world.

I will remember.

I will not just remember but will be someone…
…who spreads hope
…who takes care of themself
…who loves and be loved.

I will remember.

I will remember not just for…
…those who we have lost
…but for a different world
…and for those we won’t lose.

I will remember.

10 Second AAC on a Mac

Speech can be a difficult way of expressing yourself if you’re an autistic, even if you can sometimes use typical speech.  AAC (Augmentative and assistive communication) is basically any technology or system (including low-tech such as grunting or writing) to communicate without using typical speech. While I’m a huge advocate of low-tech solutions for lots of reasons, sometimes it is nice to have a text-to-speech device. If you have a Mac computer, you already have a basic AAC text-to-speech device – and you can access it with about 10 seconds worth of work.

This is not a substitute for a decent AAC solution that fits the user, but it’s a quick and dirty method that may help you out sometime.

  1. Open a terminal window by using pressing both the command and space buttons at the same time.  In the search box, type “terminal” and press enter.
  2. In the new window, type say -i and press enter.  The -i is actually optional – it tells the “say” program to highlight the words as they are spoken.
  3. Type something and hit enter. It will speak whatever you typed.
  4. Repeat step 3 as needed
  5. When done, you can just close the window

There are a ton of options for the say program, such as -v Victoria or -v Alex for different US English voices (these aren’t the only options). There are voices for other major languages besides English, and also voices for other English speaking locations than the US.  For instance, -v Daniel is a British man’s voice.  Unfortunately I don’t know if there is an equivalent for a woman’s voice (there is not on my computer).  There are some voices that might be more fun too, like -v Zarvox (a robotic voice).

You can use these other voices by, at step 2, typing something like:

say -i -v Zarvox

And maybe you now have another option for communication!

Prompt Critical Excursions in Autistics

In nuclear physics, a nuclear reaction is said to be “prompt critical” if the splitting of one atom causes the release of immediate neutrons that cause an additional atom to split. An excursion in a nuclear reactor or experiment occurs when the nuclear reaction rate exceeds the desired rate. Typically, this is a bad thing – Chernobyl, for instance, was a prompt critical excursion. Now, I’m not a nuclear scientist, and have only taken two freshman level physics courses (nuclear fission was not covered), so I’m probably using these terms wrong, so I beg forgiveness from any readers that actually understand nuclear fission!

Autistic people – and likely other people under extreme stress – are subject to a similar type of excursion. I’m not talking about a meltdown that is traumatic to the parent of an autistic, but something more innate and troubling to an autistic person – and something that can often be prevented.

I can explain it best with a story from my past. I’m mowing a lawn as a teenager to earn some money when I accidentally run over the hose. Now that’s not the end of the world, but it’s definitely not a desired outcome of lawn mowing! Maybe my attention was elsewhere, maybe I misjudged where the hose was, maybe I just didn’t realize it was there under the tall grass – but regardless I did something you most certainly don’t intend to do while mowing the lawn. But, I move the rest of the hose out of the way and keep going.

Of course the hose is still on my mind – how am I going to explain that I did that? What will happen when I tell the adult? How can I replace the hose? Suddenly, I realize that I’m plowing through the vegetable garden with the lawn mower, murdering scores of carrot plants. Shit! How could I be so distracted?

Now I have to explain how I ran over the hose and the vegetables! Nobody is going to believe that I ran over the carrots accidentally after I just ran over the hose! I should have been more careful, that’s what you’re supposed to do when you make a mistake. But I made things worse, as now the I have to explain the hose and the vegetables. And you can’t replace the carrots in the middle of the growing season – it’s not fixable. Fuck!

But while I’m thinking of this, I finally realize I’m hearing an awful sound from the mower! How long has it been doing that? I shut it off, hoping I didn’t destroy anything. The engine sure looks hot. I check the oil – only to find it doesn’t seem to have any. Shit! Now what? I go find the oil and add some to the mower, hoping that solves my problem – but I can’t even pull the cord now. Shit, the engine is seized! Fuck! I murdered a hose, carrots, and a lawn mower! Why didn’t I check the oil level?

Unfortunately it’s not my mower, carrots, or hose – I’m mowing my neighbor’s yard with her mower. So I walk up to her porch, so I can knock on the door and face what I have coming. As I ring the doorbell, I step to the side, to be clear of the door. What am I going to say? What are my parents going to say? As I do this, I feel something brush my leg, then, too late, I realize that I just knocked her garden gnome off the porch, five feet to its’ death. It’s smiling, decapitated head seems to be laughing at me. Nothing is going right – I even killed a garden gnome. I don’t know anyone who has killed a garden gnome. I don’t even know what the penalty for garden gnome murder is. Maybe I an claim gnomeslaughter, because I didn’t intend it. But of course the neighbor is going to think I wanted to destroy all her stuff. Shit!

This was a slightly modified story of real events – I did murder a mower, carrots, and hose, as well as a chunk of fence, but the mower was killed in a different way, and, thank God, there was no gnome on the step! But I imagine at this point, I was in tears, even as a late teen, and probably just couldn’t handle any of the world right then – everything I touched turned to shit.

I suspect most autistic people can relate to this – one thing goes wrong, and, like a prompt critical excursion, that causes the next thing to go wrong which causes the next thing to go wrong, until the cycle runs out of things to go wrong.

I will say one thing: The wrong thing to do in this circumstance, if you’re on the other side of the door while I’m standing on the porch, is to say, “Why weren’t you more careful after the first mistake!” The right thing to do is what you do to stop a nuclear reaction: you separate the atoms (or, in this case, the many possible things that could go wrong), preferably with something that absorbs the neutrons. Ideally, you recognize what happened as someone trying to do right, making an honest mistake (the innocent hose), and then that knowledge of a mistake screwing up the coordination and thinking ability of the person, so that, naturally, something else went wrong. Sure, someone else probably would have recovered enough after the hose, but not everyone reacts the same way to things.

I’ll guarantee the autistic is mortified, embarrassed, and very sorry. This wasn’t what they set out to do. And they know they fucked up without you scolding them. The self punishment is plenty to negatively reinforce.

But, to someone who hasn’t experienced this, it looks like someone throwing a tantrum, taking out aggression on everything nearby (or, in the case of a social criticality, everyone nearby). But this isn’t aggression, even when it triggers socially inappropriate responses to other people – its incredible stress as a world the person is trying to live in falls apart around them, with everything they try to do to respond (such as think of the script for telling someone they messed up, like a responsible person would) causes yet more problems.

So, if you see this, look at that first event – could it have been an accident? Was it perhaps not done intentionally? Could the following events possibly be explained by the stress on the autistic after doing the first one?

Even as an adult, I run into this cycle. When things go wrong, they really go wrong for me – and people just can’t understand that perhaps I wasn’t trying to be an asshole, but made an honest mistake that created more honest mistakes. Give me some space away from the problem, let me know you recognize that I’m having a bad day and didn’t mean for things to go to hell. Encourage me, but don’t pressure me to try again later (you don’t want more excursions!), showing confidence I can do it, giving me space and time to make sense of the world again. It’s not defiance, it’s an accident.

I’m Sorry I Hurt Your Feelings

Really, I’m sorry I hurt your feelings.

Perhaps you are a parent, a therapist, a brother or sister, or somehow otherwise someone who has an autistic person in their life.

Perhaps I said something you didn’t like. Maybe I said I don’t want to see autistic people medically abused to solve “behaviors.” Maybe I said that ABA therapy is harmful. Maybe I said your anti-bullying system is cruel because it focuses on changing the bullied rather than the bully. Maybe I said that it’s okay for autistic people to have sex and masturbate. Maybe I said that doctors ignore our complaints. Maybe I had no sympathy for someone who murdered an autistic person, and said I don’t give a shit if they were stressed.

You see, no matter how nicely I try to say these things, how gently I try to explain that some things people do to autistics (even with good intentions) cause harm, it’s not these things that matter. Often, it’s the non-autistic’s feelings.

Even worse, for autistic people, these things aren’t about us wanting to defend our pride and ego, to have people have sympathy for us, or to justify whatever it is we’re currently doing. No, they are about our life.

You see, you might be upset because I dislike some random social skills training program.

Yet I had the shit kicked out of me for not being normal. I’ve literally run for my life. Even as an adult, I get stares, fingers pointed, and laughter directed at – certainly not with – me. So, yes, I’m sorry I said that social skills program was bad. But I’ve had decades of social skills training, decades of society trying to fix how I interact through negative reinforcement and repetition. I’d like to see people like myself able to live without fear of beatings and humiliation just because we forget some social rule.

You see, you might be upset because I say that the medical world sucks for autistic people, or that a drug is bad, because you’re doing that thing with someone you know.

Yet I go to the doctor and have my cries of agony ignored, because I’m probably just “anxious.” I’ve never had pain adequately treated by a doctor, with the exception of some dentistry (and only some). My cries of pain are ignored. Pretty much always. As are my sensory concerns. Ironically, I’m accused of not wanting treatment for autism, but when I ask for treatments that exist for sensory conditions that cause me pain, I’m ignored or told “everyone has that.” No, everyone does not have this pain when they go outside. You’re upset because I said the strong anti-psychotic you gave your kid might be a bad idea. Of course I’m part of the people doctors try to trick into receiving it against our will. So, ya, it’s a little personal for me.

You see, you might be upset because I lack empathy with the parent who drowned/choked/poisoned/stabbed/shot their autistic child — I don’t recognize how hard it is to be a parent.

Yet it’s not non-autistic parents that are being drowned and choked and poisoned, it’s autistic people. It’s people like me. So you aren’t going to get an apology from me when I have more empathy for the child that was a problem to dispose of, rather than having empathy for the adult who should seek a solution to their problems that doesn’t involve murder.

I realize #NotAllParents are awful to their kids. Plenty of therapists do good work. There are some wonderful doctors. I get that – how could I not? But I should not be forced to shut up about how me and my kind are being harmed just because people don’t like hearing certain things they might or might not do are harmful. All too often, we’re asked to remember the feelings of others, and how it might feel to have something they do be criticized – as if we don’t know what that feels like, having everything from the way we smile to the way we show joy to the interests we have to our self care skills criticized our entire life. We know what it feels like to be criticized. We also know what it feels like to be subjected to constant behavioral treatment, forced medication, inferior medical care, sub-standard education, and physical attack. We know what it feels like to be bullied every day of 13 years of school, with no day when you’re just left alone. We know what it feels like when the first thing talked about when another autistic person is murdered is how hard the caregiver’s life must have been.

In the meantime, I better remember to tell all the non-autistic people that they are okay and doing nothing wrong, whether or not they are. I can’t leave this unsaid, lest some person read criticism that wasn’t intended. Their feelings matter. That’s what this conversation is supposed to be about, after all.