I have my own domain name now

I have re-started this blog on my own domain and hosting. Please update your bookmarks and rss feeds to http://www.unstrangemind.com

Over the course of time, I will be moving posts from here to there, leaving behind a bread crumb trail so people can still find them.

I have just added my first new post to the new domain. Please go read it. Thank you.

How Having Savings Saves You

Every Human Life Cut Short is a Tragedy

lit candles with one big candle in the foreground

[image description: a group of lit candles with one big candle in the foreground]

This is an autism blog, but today I need to talk about other people’s struggles. I need to express solidarity.

In 1977, Disabled protesters and allies won the 504 regulations that benefit Autistic children today. The protest was a 23 day sit-in at the Health, Education, and Welfare office. That protest was made possible by support and protection from the Black Panther Party.

They stood up for us. It is time to return that love.

We cannot separate Black issues from Disability issues.

We are theirs; they are ours. Oppression of one is oppression of all. Please read my words. Please do what you can to end all oppression. If you care about your oppression as an Autistic person or the oppression your Autistic child faces, please know that we are all connected and we all need each other in our struggle to build a just society for everyone.

This post is mainly directed at my fellow white people. This is my attempt to amplify what I hear Black people saying. This is my attempt to do what Black people I love and respect have asked us to do: use our white voices to help get their message out to those who don’t listen to Black voices. Black people are strong and don’t need us to speak for them. But they do need us to listen to them and this is my attempt to encourage others to listen, too.

—–

I will remember this as the summer everyone’s emotional flags were at half-staff.

I had to leave Florida last month because the grief I felt over the shooting at Pulse was too heavy to bear. I was hot. It was humid. And someone had just killed nearly fifty of my people, executed them in the one place they felt most at home, most themselves, most safe.

I am watching what is going on this week and feeling I have no place to speak because I am white, and Black voices must be privileged in the shooting deaths of Sterling and Castile. I feel I have no place to speak because I have been persecuted terribly at the hands and under the pointed guns of cops, yet I recognize the shooting deaths of police officers were not just and were neither called for nor celebrated by the Black Lives Matter movement.

But I do have a place to speak about grief and the loss of human life. I have experienced much grief in my life, including but not limited to: the death of my daughter from birth trauma; the death of my brother from cancer; the death of my fiance from SUDEP; the deaths of my dear friends Margaret, Kevin, Tom, and Dave at their own hands; the deaths of former lovers Ron and Alan from cancer; the death of former lover and dear friend Dave from food poisoning.

I have experienced much grief in my community, watching the news stories roll in month after month of parents killing and attempting to kill their Autistic children, of police responding badly to Autistic adults. I have watched news of trans people being beaten and killed. I still grieve the loss of Matthew Shepard, the Gay young man killed in Wyoming almost 18 years ago, so deeply it still moves me to tears today. Only five months ago the police shot and killed Kayden Clarke, an Autistic trans man. Autistic people are my people. Trans people are my people.

I do not have the target on my back that Black people, especially Black men, live with every day. But I do know what it’s like to be a member of a disenfranchised and targeted group of people. I know what it’s like to watch as my people are killed and the only reason they were killed is because of who they are, not what they have done. I know what it’s like to grieve the loss of my people.

And I know what it’s like to feel like I am surrounded by people who don’t get it, people who say things that make the trauma even worse, people who only add to my feeling that the world hates us and wishes we were all dead.

So while I don’t feel I have a place to speak about the lived Black experience, I want to talk about grief and pain and what we all can do to comfort our fellow human beings in this time of incredible loss. We must listen to their pain and share it. We must listen to their outrage and share it.

Before you open your mouth to say anything, stop to remember that the lives that have been lost were the lives of fellow human beings. The people who were killed this week were sons, partners, fathers, brothers, friends. These deaths are like heavy stones dropped from a great height, spreading ripples farther than you could imagine. Any human life cut short is a tragedy. Give that time to soak in.

Don’t think of these killings as statistics, political statements, entertaining news stories, or anecdotes. Think of them as human lives tragically cut short and causing long-lasting pain to hundreds of people and extended pain to thousands, maybe millions of people.Let the pain and sorrow and outrage and grief touch you. It’s messy. It’s hard. Feel it.

These weren’t “other people” who were killed. They were human beings and that means they were our people. Every one of them. I am white, but Sterling and Castile were my people, too. They were human beings; they are ours.

Do not share pictures of bloody, broken human beings. It is disrespectful to their families to have to see those images everywhere they go. It is disrespectful to these human lives to only show the world their lowest moment. Share pictures of them alive and smiling. Share pictures of their with friends and family, in relationship and surrounded by love. Share pictures of them receiving awards and recognition of accomplishments.

Tell the world about the outrage and the tragedy. People will go look for the videos. I did. So will others. You don’t need to share the images of death to encourage people to care. People who care will seek out those videos and images as they are ready to process that information.

Instead, tell the world about Alton Sterling, the struggling father of four who had a hardscrabble life of poverty but still gave away CDs, food, and drink to others out of the kindness of his big heart.

Tell the world about Philando Castile, the gentle, beloved cafeteria worker who made sure all the kids got enough to eat, sneaked them extra graham crackers, and gave a loving, accepting hug to an Autistic student every day.

Do  not say “All Lives Matter.” Of course all lives matter.  But when you use those words to say it, you are not expressing solidarity with all humanity. You are specifically erasing the Black Lives Matter movement. The Black Lives Matter movement is reminding us that Black lives matter TOO. They are not claiming Black lives are the only lives that matter. They are spotlighting the injustice and systemic racism that Black people face every single moment of every single day. They are holding a mirror up to a society that says all lives matter but does not really act like it.

I have never had to experience life with such a visible difference that others react to with fear, mistrust, hatred, and violence. I have been subjected to injustices as an impoverished Autistic with a very female appearance, but I realize that is nothing compared to the injustices Black people experience. I can draw on my own experiences when feeling compassion toward Black people, but I can never understand–no matter how hard I try–what it is like to live Black. 

Black people began their journey on this soil as captured slaves. Black people in the U.S. have only been free 150 years. Studies have proved that employers presented with two identical resumes other than a Black-sounding name on one and a white-sounding name on the other will overwhelmingly choose the white-sounding named person, despite no other differences in education, accomplishments, and experience.

Black people still struggle to escape the shadow of the slavery that brought them to these shores against their will and kept them imprisoned and suffering for 245 years. Six generations of freedom has not put Blacks on equal footing with whites. We do not live in a “post-racial” society. We have not “solved” everything by electing a Black president. There is still so much work to do and it is time for us white folks to step up and do our share, too.

I am typing this in a McDonald’s and behind me the television has been broadcasting nothing but news for the last three hours. I heard the unmistakable sounds of Diamond Johnson’s Facebook livefeed video and was sickened to see two young white men in this restaurant watching the television with smug smirks on their faces. We white people need to work for equality, not stand aside and smirk.

Do not talk about a “race war” or call the Dallas protest “anti-police.” Phrases like “race war” are instigating, escalating language that makes things worse, not better. The Black Lives Matter movement is calling for police reform. The Dallas gathering was peaceful. The sniper who killed five police officers and wounded seven others was not part of the Black Lives Matter movement and even went so far as to say he was against it.

This is not a race war. Grieving, frightened people are calling for an end to police brutality. Do not believe you are safe because your skin is white. White people are being subjected to police brutality, too. The Black Lives Matter movement is the canary in the coal mine — that is to say, police brutality is enacted on all of us, but watch the reactions. When the victim is white, the overwhelming social attitude is horror. When the victim is Black, the overwhelming social attitude is to ask what he did to bring it on himself.

When the victim of police brutality is white, no one asks their survivors to justify their existence. When the victim is black, the first thing the media does is run a background check.

I watched Castile’s family repeatedly saying, “he was not a thug. He was not a criminal.” No, he wasn’t. But why does that matter? The man was executed point-blank for a broken tail light. Whatever he did before that moment has no bearing.

It doesn’t matter that Castile was not a criminal. It matters that so many people assume a Black man is a criminal until they learn otherwise. “Presumed innocent” does not count for Black people and that’s messed up. That needs to change. We need to change that.

Don’t make things worse by calling this a race war or insisting on appropriating the phrase Black Lives Matter to make any point about white lives or “blue” lives. Accept that sometimes grief and outrage is not about you. Accept that sometimes you just have to listen and love, not try to always twist the spotlight in your direction. Accept that police brutality is everybody’s problem but stop striving to take attention away from Black grief and Black struggles with a racist system and racist society.

Beyond that, acknowledge that the Black Lives Matter movement is fighting to make a better world for you, too. White people are not out in the streets calling for an end to police brutality even though we are subject to it as well, to a lesser degree than Black people. Support and listen to the Black Lives Matter movement because the world they are trying to build will be better for everyone. They are helping you; help them.

Yes, I know it hurts to think of yourself as racist, but I am here to tell you that if you look white, you have advantages and those advantages are paid for by racism. I recognize that I am able to live the life I live because I am white. When you are told that you have white privilege, do not pull out all the ways you are discriminated against because that is another way to erase the very real racism that Black people cope with every day.  Yes, everyone is subject to potential prejudice and oppression. But Black people have been getting the short end of the stick in this country for 400 years. Do not erase their voices when they tell you how hard that is to live with just because it is hard for you to hear it and hard for you to think about the ways you benefit from being white.

I live in poverty and oppression with sexism and ableism every day and it sucks. But I benefit hugely from being white. I am not ashamed of that because I never asked to be born white any more than I asked to be identified female at birth or any more than I asked to be born with an Autistic body and brain. When you hear that you have white privilege, do not feel ashamed and do not feel like you have to justify how you are also oppressed. Those feelings don’t help dismantle racism. Those feelings just amplify white privilege at the expense of Black voices.

Acknowledge that you have white privilege despite any other disadvantages you also have and work to dismantle the racist structures of our society and eradicate white privilege. Use your white privilege to amplify the things Black people are saying. Use that privilege to put good in the world instead of denying that your very real privilege exists.

Recognize that structural racism killed these police officers despite their whiteness. The shooter hated police and hated the Black Lives Matter movement. Every person who calls Black Lives Matter “anti-police” is contributing to the same forces of racism that killed five police officers. Over and over I have listened to representative of Black Lives Matter tell us that they are not about hate; they are about love. They are not against the police; they are against police brutality and a racist system that continually lead to the death of their family and community members. The officers who were killed were there to protect and serve the Black Lives Matter voices. They died supporting a peaceful call to end racism and police brutality. Do not allow their deaths to make the situation worse. Grieve their loss, too. There is nothing contradictory about supporting Black Lives Matter and feeling outrage at the killing of police officers in Dallas. But don’t let the rhetoric distract you from the root of everything that has happened this week. Don’t let the focus waver from Black lives and the ways they are treated. They are treated as if they don’t matter. Tell the world that’s wrong. Tell the world that Black lives DO matter.

Beyond all else, remember that this week has been a graveyard. Respect that.

Before you say anything, ask yourself: “will these words help make the world safer, more compassionate, more just? Or do these words only serve my own interests?”

Reach out to those who do not look like you. Seek unity with those who also struggle.

Remember the words of Martin Niemoller: “Then they came for me / And there was no one left / To speak out for me.”

Speak out. Amplify Black voices. They have been there for us. We must be there for them. 

Solidarity. Unity. Black Lives Matter. Stop the killing.

 

 

Anxiety and Mental Health Accessibility

I wasn’t sure if I would write about this or not. I have shared many deeply personal and private things with my readers, but this is hard and humiliating and I’m not even sure why this is harder to share, but it is. So please be gentle.

I have anxiety so bad and have had it for so long that I didn’t even realize how anxious my baseline state is until the first time I smoked marijuana and experienced what it’s like to feel peaceful. My anxiety makes every day a struggle. Even my good days are riddled with anxiety. As I said, it is my baseline state.

I should add that therapy makes me more anxious. Every so often I struggle so much that I think about trying therapy again, despite knowing how hard it is on me. I get hopeful and decide to gamble on the off chance that this will be the time that I finally find a therapist who gets me and has the tools and training to make a difference in my life.

This morning was one of those times.

I saw a notice for a table at a local library branch. For two hours, a local “behavioral health” (that phrase is so creepy) organization would have a table available for people, “to learn more or to get information about ALL services [agency] offers.”

That sounded promising, so I went.

The entrance to the library was a sensory nightmare. I had to get past a food box hand-out at the door. I am glad someone was feeding people, but it made for a confusing sensory nightmare plus a big audience of strangers watching me trying to get information about a sensitive topic.

Inside, I struggled to make visual sense of the room. There was a table with a person at it, but no sign identifying who they were or why they were there. It used up just about my last drop of processing to get to the table.

So there I was, fidgeting, rocking, avoiding eye contact, having a really hard time of it and pretty sure it showed. “Is this the [agency] table?”

“Yes.” And they waited for me to say more.

“It said you would have information about your services?”

“What service do you need?”

Now … some of you are Autistic and some of you are parents to Autistics (and some of you are both.) So you know what I’m about to say.

I couldn’t make the words. And even if I could, I was not comfortable telling my troubles to a stranger in a very public setting.

I see now, at least somewhat, what they meant and what I was supposed to say, but in the moment, it was too much.

“What do you have?”

They rattled off a string of words faster than I could process them all– who knows? There might have been a better fit in there for me, but I managed to latch on to “mental health services.”

“Those. Mental health.”

They picked up a pamphlet, “you can call this number, and…”

“I don’t do phone,” I blurted. This should really be an expected response from someone with anxiety issues, right?

“Is there just a pamphlet I could read or something?” By now, I was hitting the end of my “spoons.”

They tried to hand me the same pamphlet. I looked at it. It was for alcoholics and addicts.

“I’m not an alcoholic,” I said, feeling lost and helpless and pretty certain the wizard had nothing in his black bag for me.

“Yes, but this phone number …”

I was sunk. It was back to the phone call. If I could have made a phone call, I would have done it already, not come to a table hoping to get information and answers about how [agency] might help me.

“Thank you,” and I took off out the door, double time, to go sit in my van where I shook and cried, getting myself together enough to drive away.

What was the point of putting someone on that table who didn’t know how to talk to anxious people and didn’t know how to educate a mental health care consumer about their options without being stressful and triggering?

How many anxious people are not getting helped because access to services is blocked by the lack of accommodation for the very issue that brings them seeking services in the first place?

I’m back to business as usual: coping with anxiety by hiding, leaving places, shaking and trembling, stimming, chewing on things, running away, having panic attacks, and smoking marijuana whenever I can afford it and get away with it (please bring medical marijuana to all fifty states! Better yet, bring medical marijuana *and* recreational marijuana so those who don’t have the money or coping skills to go through the medical system can still have safe, legal access to a medicine they know helps them.)

There is something really wrong when helping agencies become access barriers to the people who most need their services.

I tell myself it’s just as well: any agency that can’t even advise me without sending me into a panic is not going to be able to help me anyway. And therapy that is not helpful to me is often actively harmful to me.

But getting help with my anxiety was still a nice dream while it lasted.

My point here? If you are in a position to help or serve a vulnerable population, do your homework. Destroy the barriers your potential clients face in seeking your help. Be sensitive to the needs of your target population and don’t leave them high and dry because they are too anxious to make the right words and too put off by your continuing to offer things they’ve already made clear that they can’t access.

That’s all. Vulnerable populations trip over our own feet enough as it is. We don’t need to trip over yours, too.

Dear Young Autistic – Anger

a young person with hands on the sides of their head and screaming in angerDear Young Autistic,

I am like you. I am Autistic. Now I am a middle-aged Autistic (I’m probably older than your parents) but I was once a young Autistic like you are now.

One of my biggest struggles was (and is) with anger. People have commented many times over the years about my anger. You might be angry, too? People around you might talk about your anger to you or to each other where you can hear them. Or maybe people don’t talk much about your anger because you’ve got ways to push it down and hide it from everyone. If you think you aren’t angry at all, check to make sure you didn’t hide it so well you can’t see it yourself.

Why was I an angry young Autistic? I felt stuck in a world I never chose and couldn’t understand. There were many things in life that were easy for me to excel at — often things others found difficult, like playing the piano, solving logic puzzles, quickly memorizing long poems and plays, learning foreign languages. But everything in life that required me to work and play with other people was out of my reach.

I was angry because people would see how hard it was for me to try to fit into the world of people and they would laugh at me, call me names, tease me, exclude me, even hit and hurt me sometimes. I learned early that everyone talks to kids about how important being good at academics is and almost no one talks to kids about how important understanding humans is. But it turns out that understanding people is more important for success in the world of people than understanding academic subjects is.

I was angry because the world was so frustrating and exhausting. I was stressed out, worn out, burnt out, cast out.

My anger got me in a lot of trouble. My math teacher called me argumentative. My English teacher called me overly reactive. My parents said I was bringing trouble on myself by showing my anger because as soon as the other kids saw that they could make me mad, they had won. “Won what?” I wondered. Was it really a game to the other kids? Some kind of contest? What sort of cruel game is it to single out a classmate who is struggling and suffering and burden them with taunts and blows? Who “won” when I retaliated in anger and ended up being the only one punished for an experience that was designed from the beginning to punish me in every way possible?

I want you to know that I understand. The world is completely unfair and there is so much that is genuinely worth getting angry about. I know you have been worn down by your anger and by the world’s reactions to it, but I want you to know that you should never feel ashamed of your anger or lesser for having a hard time controlling it. It is logical to be angry when you are stuck in a confusing, often violent world, tormented every day, forced to waste so much of your energy trying to hide your very understandable anger, punished for things you can’t help.

I also want you to hold on to hope. I am decades older than you and I am still angry. I am very, very angry. Sometimes the only word for it is furious. But I get better and better all the time at channeling that anger into producing things — writing, art, dance, music — that I value and that others (usually) do not want to harm me or shame me for producing.

We are Autistic and that means that we have our own ways of growing and changing over time. You will learn to cope. You will learn to manage your intense feelings more and more every day. It will never be perfect; we will never be Mr. Spock. But it gets better; it gets easier.

When I was young, I bit people. The last time I remember biting someone, I was 14. I would still bite someone now if they were attacking me and I needed to save my life or someone else’s, but I haven’t bitten anyone in anger in 35 years. That’s a victory. I used to hit people with hard things and I stopped that, too. I no longer hit, bite, scratch, or kick out of anger, though I would do all these things and more if I were being physically attacked. That is what I have been able to control: responding with physical violence to those who tease and torment me.

Yes, I still get teased and tormented as an adult. But now I am (usually) able to walk away from that person and have nothing to do with them. I know school can be hard. Hang in there! It seems like it will be forever, but soon there will come a day when you get to make more of your own choices. Soon you will get more choice about who you spend time around. Soon you will be allowed to avoid so many of the people, places, things, and words that make you so angry right now.

In the meantime, don’t let bullies and anger distract you from academics. Learn everything you can. Specialize in knowing about the things you love. Your knowledge and the use you put it to will be what lifts you out of the places you feel stuck in now. Learn breathing techniques. Consider studying meditation. Find a strength inside yourself, even if you think it isn’t there. It is. And while emotions rage through you like seaside storms right now, trust that you can and will find calmer seas as you age.

With autism, we get a great gift. Those kids around you will grow and change but somewhere in their mid-twenties they will hit a point where changes are slow and small. They may seem ahead of the game right now because they had all kinds of emotional growth spurts early in life while you were still working on getting your bearings. But we Autistics grow and develop throughout our lifespan. No, you won’t see much in the scientific literature about that, but I know lots of Autistics my age and older and I feel very confident in telling you that you will continue to change and grow in your thirties, forties, fifties, sixties, and beyond — as long as you live. Take a moment to think about how marvelous that is, what a treat, what a privilege.

You will find it easier and easier to remain calm, saving your anger for those times when you need its emotional jetfuel and not wasting it on automatically reacting to jerks. Those jerks will be running the same tired emotional-social-developmental treadmill for the rest of their lives while you will be ever reaching toward new adventures. Don’t be ashamed when they make you angry. If not now, one day soon you will come to pity them.

 

Working, Access, Disability, Inclusion, and Internalized Ableism

When I’m not working with the public, I start telling myself this story inside my head about how I’m “disabled, but not really disabled, you know?” Right, that story. Internalized ableism rears its ugly head again.

And then, just as I’ve gotten myself talked into the notion that “the last 20-something years of living on SSI have just been a sweet scam and how on earth was it so easy to get on that, anyway?” … then I try working again.

Like right now.

A happy confluence allowed me to start driving Uber in the town where I was hiding from winter weather. My car is new enough and in good enough shape, I have a smart phone (although Uber will get you a smart phone, they are that desperate for drivers), I love to drive (I mean I love to drive the way Clay Marzo loves to surf. I have put over 22,000 miles on my car in the last year. I really, really love to drive. It soothes me.)

So I’m all, “I can linger here and pay down my debt as I drive Uber. What magnificence.” And the first week was really great, because I was stoked enough to drive several 8 hour shifts in my first week, which was also a really busy week because I drove my first day on St. Patrick’s Day.

The fact that I survived a three-day drinking holiday in a college town fueled those thoughts I always carry around with me about how I could really work, all the time, every day, and be awesome and stalwart and stoic and shoulder to the wheel because I’m “disabled, but not really disabled, you know?”

And then reality hit. It got harder and harder to go to work and stay at work. If this were a job for someone else, I’d be fired by now and it’s only been three weeks. The only reason I am still capable of driving Uber is that I have no set hours and can turn my cab on and off as much as I need. Even with that, I hit a situation last week where I ended up needing to put some unruly people out of my car and work got even harder afterwards.

Just like Clay Marzo can surf all day long but can’t handle the people-aspects of competition surfing, I can drive like nobody’s business (“I’m an excellent driver.” – Rainman) but can’t handle the people-aspects of driving a ridesharing/cab service.

I’m still driving. For now.  I need to pay down some debt I’ve amassed that’s got me painted into a financial corner at the moment. And since it turns out that I have to stay in town to fight to get health coverage, it makes sense to keep driving for a while, as I can, keeping a close eye on my total income to keep from losing my disability benefits (though they’re not currently in danger, my income is turning out to be so slow.)

I have to protect my SSI because it’s so clear now that I could not survive on working for a living — my income from Uber quickly sank to a point lower than what I’m recieving on disability (which, itself, is 20% below the poverty threshold.) I’m pulling down about a quarter what I did that first week, even though business is every bit as steady as that first weekend. Uber can’t keep enough drivers, so I’m constantly on two runs at once all night long. There is more work out there than I could do. But I am still unable to sustainably support myself by working.

Thing is, I find my endurance waning. If all I did all night was drive around where my gps tells me, I could work the legal limit of 12 hours a day, no problem.

But I am driving *people* around. And that means interacting with people. And it sometimes means grappling with conflict. And it’s really hard. And draining. And did I mention hard? Hard and draining.

I know everyone’s work is hard and draining. But I’ve also watched what everyone else can sustain long term and compared it to what I can do when I’m trying so hard I make myself ill. This is how I figured out that I’m among that group of people for whom work, if even possible, is far more hard and draining than work is for abled people.

I’ve often thought the ideal job for me might be forest ranger on permanent fire watch. Or maybe lighthouse keeper. Or that guy who gets left behind on Mars. You know, pretty much any job that doesn’t include humans other than just me. Me and some work to be done sounds like a really satisfying day. Me plus other humans and some work to be done? Rarely ends well.

And the working world is so unfair, because I am the one who has to pay the price for the access lack and I am the one who gets blamed for access fail because everything’s on my shoulders all the time.

Oh, and I’m starting to remember that I actually *am* that disabled and there’s no shame in it; it is what it is. And it’s not about trying harder, because I’m already trying harder than anyone should ever be required to. It’s about access and the lack thereof. And about not letting internalized ableism drown me under a false belief that I am and should always be the only person 100% in control of and the sole provider of my own access needs with no help or accommodation from anyone else.

There’s still a lot of work ahead of us activists and advocates if we are to carve out a world with true inclusion. It sucks how much work we have to do. Ever has it always been for those who hack through the wilderness with machetes. The work is hard and the rewards often come after the workers can no longer reap the benefits of their labor.

But we are shaping the future — or trying to, anyway — and there is an intangible, intrinsic reward to being a builder, a fighter, a gadfly. We are biting through, every day, piercing holes to let the light in. Whether shoulder to the wheel or struggling to avoid slipping beneath it, we keep working for forward momentum, gaining more ground, a millimeter at a time if that’s all we can get for now.

No, I’m not very good at working for or with others. I want to work. I love to work. But this world still leaves only narrow gaps for people like me to try to slip into if we can. I can drive. I can write. I have a good memory and a thirst for learning. I have many skills, valuable skills.

And I have a massive, rarely-met bundle of access needs that have stood as barriers between me and what I could earn for myself in life with those skills (and there’s more than just money I could earn in life if I had the right tools. So much more) all of my life.

In adolescence, I wanted to be a veterinarian. Or a neurosurgeon. There is little doubt I would have gone into some medical field or another if I’d had autistic-understanding mentorship in my youth. And an autistic-accepting working world to enter into.

So many other Autistics are in similar situations or growing up toward them. We are biting through but we need to keep biting and bite harder because we are still so far away from inclusion. We haven’t even begun to leave teeth marks yet.

We need a world where people aren’t excluded for moving differently or for communicating in different ways. We need a world where people understand that fulfilling access needs requires more than ramps and sign interpreters and Braille. Yes, of course we need more ramps and ASL and Braille and captions and curb cuts and so many other important access aids.

But for those of us seeking accommodation for neurodivergence (as well as those with chronic conditions, invisible disabilities, relapsing-remitting conditions that dramatically change in day to day access needs) access hasn’t even begun.

We’re early in this battle. It’s hard. We have to keep biting, biting, biting through. In the poetry of Laura Hershey, we all need to “remember, you weren’t the one / Who made you ashamed, / But you are the one / Who can make you proud.” (You Get Proud by Practicing)

We need to practice until we find enough pride to seek co-operation from others in getting our access needs met together. We need enough pride to own our needs and feel okay about getting them met and we need to shape a culture where access needs are respected and human beings — in all our variety — are valued.

I’m doing better with work than I ever have before, but still not well enough to support myself. In the process, I have gained further insight and increased clarity about myself. I have grown in compassion toward myself and practiced being proud. I have noted, yet again, some of the inequities that come with disability. And I have a renewed commitment to doing what I can to help roll the movement forward, pushing on for a better world, stacking hope upon hope in a collaborative effort to build a future where all are valued and supported instead of neglected and rejected.

Autistic Shutdown

shutdown

It looks like caution tape because autistic shutdown is something that should be treated with caution. A shutdown now and then won’t hurt, but regularly repeated over time, shutdown can lead to neurological damage, especially in children.

By now, pretty much everyone who knows much of anything about autism has heard of meltdowns — episodes of frustration and panic that seriously disrupt the lives of Autistic people, to varying degrees and amounts per person. But shutdowns don’t seem to get talked about as much as meltdowns and I run into people who, despite the blue-illuminated buckets of “autism awareness” out there, were completely unaware of the phenomenon of shutdown.

I had a pretty bad shutdown last week so I thought I ought to write a little bit about them. The people in my day-to-day life were unprepared to deal with a shutdown and that increased everyone’s stress levels. More education about shutdowns can’t hurt and it could help quite a bit.

Shutdowns and meltdowns are more similar than they might appear on the surface. One (somewhat simplistic but workable) way to think of shutdown is a meltdown turned inward instead of outward, much as some people describe depression as anger turned inward.

My most recent shutdown started off as a meltdown. My brain was going through all its usual short-circuits when some synaptic gap got crossed. Or something. One minute I was out of control, smacking myself in the face, as one does, and the next minute I was on the floor, unable to move. I started to get tunnel vision. My hearing began to get fuzzy. My vision closed and closed like turning off an old tube-driven television, closing down to a tiny dot of light that winked out just as my hearing entirely cut out, leaving me alone in the numbly terrifying darkness.

If you like to get your information from audio and video, you should take ten minutes to go watch Amethyst Schaber’s magnificent discussion of Autistic shutdown on her YouTube channel, “Ask an Autistic.” I’ll wait.

Shutdown is a response to overwhelm. It is a self-protective response — shutting down the circuits before they fry, to use computer/brain analogies — but it is as much a system overload as it is a system failsafe. And too much overwhelm for too long can cause some longer-term shutdown and loss of basic skills. We’re talking everything from forgetting how to tie your shoes to forgetting how to speak. And it can hit at age 14 or age 24 or age 54.

As Mel Baggs explained it: ” Most people have a level to which they are capable of functioning without burnout, a level to which they are capable of functioning for emergency purposes only, and a level to which they simply cannot function. In autistic people in current societies, that first level is much narrower. Simply functioning at a minimally acceptable level to non-autistic people or for survival, can push us into the zone that in a non-autistic person would be reserved for emergencies. Prolonged functioning in emergency mode can result in loss of skills and burnout.”

I my case, it was just a matter of hours before I started coming out of shutdown, much like an ocean creature finally creeping onto a deserted beach after a long swim across the Marianas Trench of shutdown. But I only had one, isolated shutdown. An extended amount of time living on “personal emergency reserves” due to being forced to operate at a higher clock speed than my chips are rated for, combined with a series of shutdowns would have left me pretty burned out. I’ve gone 17 days in shutdown before, unable to speak or properly care for myself. This is why shutdowns must be treated with caution and this is why going to apparent extremes to avoid shutdown is not “lazy,” “spoiled,”  “entitled,” or any other judgmental adjective anyone has ever been tempted to drop at an Autistic’s feet. Or heap on an Autistic’s head, for that matter, since it’s often on the floor alongside the feet once shutdown hits.

Miller and Loos wrote about shutdowns and stress, both in a manner accessible to laypeople and in an academic paper. Their observations were based on a case study of an Autistic six-year-old girl who was prone to shutdown under stress. The authors found that shutdown behavior gets labelled as conscious avoidance but is more likely an involuntary physiological process caused by “stress instability,” an inability to regulate the body’s overwhelming response to stressors. The authors hypothesize that shutdown begins with the basolateral amygdala (BLA) in the brain and quickly spirals into a debilitating feedback loop: the BLA is involved in experiencing emotions. When the BLA becomes overstimulated, it can become hyperreactive, leading to extreme emotionality, heightened levels of fear, and social withdrawal.

The BLA can quickly become hyperreactive when exposed for too long to corticotropin releasing factor (CRF), a “stress-mediating neurotransmitter.” In other words, stress gives the BLA a hair trigger and the resulting explosions feed more CRF to the BLA, ramping the overload up in a ratcheting cascade of intense panic that finally flips all the breaker switches, resulting in shutdown. This is probably why my own meltdown tipped over into shutdown: I had been stressed for days with multiple meltdowns and my system just couldn’t handle any more stimulation so it shut off to prevent my brain from frying itself. My brain crawled up inside its own virtual Faraday cage to wait things out.

In the case of “the SD child,” Miller and Loos observed that one shutdown would make her extra vulnerable to more shutdowns during the following three weeks. It takes that long for the BLA to “come back down” from its hyperaroused state. It’s pretty easy to see how quickly things can take a bad turn if the brain is not given time to heal. This is the low-detail version of why I have a medical discharge from the Navy and why I was able to hold a series of minimum-wage jobs before the military but unable to get a job at all afterwards. When I signed up for the Navy, I didn’t understand my neurology. It was a devastating blow to not only fail at boot camp but come out of it so debilitated I couldn’t even keep a roof over my head any more.

This is why I speak so strongly about helping Autistic children to build low-stress environments that nurture rather than damage their neurology. This is why I warn so often against shaming Autistics for not “pushing the envelope” the way you think they ought to instead of the way that protects them from damage. Of course it’s healthy to step out of one’s comfort zone from time to time. What you need to remember is that the entire world is outside of an Autistic’s comfort zone. We live our whole lives outside that zone. Please recognize and honor that. I just can’t say that enough: we are trying and the obstacles can be as massive for us as they are invisible to you.

Treat shutdown  as the medical situation it truly is. Help us get away from bright lights and loud noises. Help us find a quiet space to re-regulate our nervous system. And be gentle with us as we recover from a neurological episode, understanding how delicately balanced our brains are after marinating in the biochemicals of stress. We need support, not blame. We need peace and stress-relief, not punishment. And, always, we need love, understanding, and acceptance.

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This post has been moved to my new blog. Please read it there. Thank you!

How We Teach Disabled People to Secretly Hate Themselves