Author: unstrangemind (Page 2 of 6)

In Praise of Dr. Paul K. Longmore

February 16, 2018 / unstrangemind

This is a re-post of an essay that originally appeared on Unstrange Mind November 10, 2015.

[image description: a photo of Dr. Paul K. Longmore. A white man with glasses, wearing a brown shirt with a collar. He has grey hair and a grey beard and mustache. His mouth is partially open as if speaking.]

I have many heroes, living and dead. These are people who are role models to me, people who have changed my life for the better and motivate me to work to change others’ lives for the better in return. Paul K. Longmore is one of those people who has paved the way for me to have a fuller and more fulfilling life. Longmore worked to make the world a better place for disabled people and his work has had a direct influence on my life. One reason I work so hard to make the world better for other disabled people is so that I can pay forward the great debt I owe Paul K. Longmore.

I learned about Longmore’s work shortly after I self-published my first book, No You Don’t: Essays from an Unstrange Mind. I had worked hard to write my collection of memoir-flavored essays about my lived experience of autism and my hopes for the children currently growing up Autistic. Not only did I write, revise, and edit all the writing, but I laid out the typesetting for the print version, designed the cover, and created the Kindle version. I spent many hours in front of a computer tweaking images by a pixel here or a pixel there and shuffling words around to prevent awkward widows and orphans (isolated bits of words at the top or bottom of a page, disrupting the visual flow of pages.)

The book released very successfully, considering what a small fish I am, and I dutifully reported my income from it. Social Security rules for earnings while living on SSI are designed to help disabled people transition from living on benefits to being self-supporting. A small initial amount is exempt and then SSI is reduced fifty cents for every dollar earned. So I expected my checks to be reduced by a small amount, but imagine my shock when my checks were slashed so dramatically that I couldn’t pay my rent anymore. (I had already spent the royalties I’d received in that first burst of sales on life necessities, assuming that I would still get nearly a full SSI check later.)

When I contacted the Social Security Administration (SSA) about the problem, it turned out that they were considering my income under the rules for “unearned income.” These rules are more draconian: one’s check is reduced dollar-for-dollar. This is why I never bothered to go get utility assistance: if an agency gives me money to pay my winter heating bill, that money is unearned income and my SSI check would be reduced by the exact dollar amount two months later. So all utility assistance does for a person on SSI is shuffle their expenses but it doesn’t actually help them in any way.

It took me months to straighten out my money situation with Social Security and I am grateful that my landlord worked with me during that time because otherwise, I might have become homeless in the middle of the battle. The SSA was applying the rules for royalties that come from things like mineral rights. If you are on SSI and strike oil on your property and sell that oil to a corporation, the money you are paid is called royalties and it is considered unearned income. I have no problem with that because selling mineral rights on one’s property doesn’t require a lot of effort on the seller’s part and the oil that is pulled out of their land is worked by someone else. That income pretty much is unearned.

But the royalties that come from a creative work of art are different. As I said, I worked hard for a long time to put that book together and I continue to work all the time to market that book. I continue to work, writing more essays and books and promoting them in various ways. The royalties I earn from my book are, indeed, earned. I haven’t yet earned enough royalties to compensate at minimum wage for the hours I put into creating the book. My task was to prove to the SSA that I had earned that money and deserved to have my income considered under the earned rules instead of the unearned rules. And when I set out to do the research to prove my case, that’s when I discovered Paul K. Longmore.

Longmore was a history professor and a disability activist. In 1953, at the age of seven, Longmore developed polio and lost the use of his hands as a result. He needed expensive medical care for the rest of his life, due to post-polio syndrome, and so keeping the medical benefits that come with Social Security disability was very important to his survival.

Longmore wrote an award-winning book, The Invention of George Washington, by holding a pen in his mouth and using it to type on a keyboard. It took Longmore ten years to write his book. I do not tell you of his writing process and the length of time it took him to write as some sort of inspiration porn. I tell you because it underlines how much the royalties from his book were earned income, not unearned in any sense of the word. Longmore worked hard on his book and it is a highly regarded book in its own right.

But the SSA did not share this view and Longmore was suffering as a result. The fact that they took away every penny he earned was bad enough, but he could not accept awards for his book if they included a cash prize and his healthcare coverage was at risk. Longmore burned a copy of his book on the steps of the SSA main headquarters in Washington, D.C., an act of protest that he wrote about in an essay included in his collection, Why I Burned My Book and Other Essays on Disability.

Longmore’s protest and subsequent lobbying lead to a change in the late Eighties to the SSA rules governing earnings from creative works, colloquially known as the Longmore Amendment.

This is just the beginning when it comes to learning about Dr. Longmore’s contributions to disability activism and I highly recommend reading his books and learning more about his life. Sadly, Longmore died unexpectedly in 2010 at age 64, but his legacy lives on. He is one of my heroes and I think he will become one of yours as well. Thank you, Dr. Longmore, for fighting for our rights.

When I took my information to the SSA — information about the change in rules and direct citations from the SSA’s own rulebook — my meeting was almost anti-climactic. My caseworker barely looked at my evidence and changed my earning status with no fight at all, treating me as if I were engaging in overkill by bringing in documentation (despite the way I had been treated earlier without documentation, even to the point of being lectured that SSI is “need-based” as if I shouldn’t even want to have a higher income let alone have a right to work for a higher income and a chance to transition off benefits, becoming self-supporting.)

My reception was irritating, but I got over it pretty quickly when I saw the results: I don’t have to report my income month-by-month. Every year, I submit my tax returns and estimate my next year’s earnings. My check is adjusted annually, based on projected earnings. I am free to focus on working hard to build my business of writing, speaking, and trying to help shape a future world that has a place for people like me.

I owe much of my continuing success to the work of Paul K. Longmore. I hope my work pays tribute to his memory. He is one of my heroes and role-models. Thank you, Dr. Longmore, for fighting for all of us disabled folk who are trying to build careers and touch the future through our work.

Free Darius McCollum

January 26, 2018 / unstrangemind

[image description: a photo of Darius McCollum. A bearded Black man with glasses wears a blue shirt with a transportation logo embroidered on the sleeve and a dark tie with a Day-Glo yellow and orange safety vest and holds a whistle in his mouth. He is in front of a sign that says do not enter – danger – keep out. The photo is from a 2016 New York Post article.]

Many of you have heard of Darius McCollum. He is the fifty-year-old Black Autistic man in New York City who has been jailed over 30 times for driving trains and buses illegally. He drives them safely and probably has more skill and knowledge than any official MTA employee, but because of ever compounding life circumstances, innocent driving that was secretly supported by MTA employees has escalated to a life of repeated criminal charges and years in prison. At one point McCollum tried working in a transportation museum where he was very happy and his knowledge served the community well. When the museum director realized who he was, however, he was fired from that job as well.

McCollum’s lawyer is asking for letters and donations to try to save Darius McCollum’s life. McCollum is facing a judge who will decide whether he can finally get treatment for his impulsive nature — treatment he has never been able to get ever before in his life — or whether he will be locked forever in a prison for the criminally insane. That prison might as well be an execution because it would mean the end of the line for Darius McCollum’s chance at having a happy or fulfilled life.

If you would like to donate to his legal defense or write a letter to the judge pleading for treatment rather than imprisonment, visit the #FreeDariusNow website:

Free Darius Now

Below is the letter I wrote to the judge. Do not copy my letter. The judge will notice duplicate letters and, as a result, take our words much less seriously — if considering them at all. Write your own words and your own thoughts if you choose to send a letter. I am including my letter to help others understand the intense importance of McCollum’s case and to inspire others to write letters as well. The more sincere and carefully thought through letters the judge gets, the more chance we have to weigh in on Darius McCollum’s fate.

Your Honor,

I am an Autistic adult, a writer and public speaker, and an advocate for Autistic people. I am writing to plead Darius McCollum’s case with you. It is my firm belief that Mr. McCollum does not belong in prison or in a facility for the criminally insane but rather in treatment that permits him to be part of society.

Mr. McCollum loves the transportation industry. He was fortunate enough to learn his passion at an early age and blessed to find acceptance and community for a time among the MTA workers who embraced and respected him. He proved himself motivated and responsible by sweeping trains and helping MTA workers with mundane tasks. Mr. McCollum is no irresponsible joyrider but a disciplined man who, through being misinterpreted and misunderstood, has missed his calling: a lifetime of service to the people of New York as a transportation professional.

The biggest criminal action in Mr. McCollum’s case is how life circumstances and the prejudices of those around him prevented him from following that calling. How many people sincerely wish they knew where they belong in this world? Mr. McCollum has known nearly all his life where he should be — serving the city of New York as a transportation professional. But his ambitions and dreams were thwarted every step of the way until we have come to this crisis point where the judicial system — where you, Your Honor — decides if the balance of Mr. McCollum’s life should be discarded forever to a grim punishment or rehabilitated.

In his 2018 book, Lost Connections: Uncovering the Real Causes of Depression and the Unexpected Solutions, author Johann Hari tells a story about a rice farmer in Cambodia who lost a leg when he accidentally stepped on an old land mine left over from war. The farmer was fitted with a prosthetic leg but fell into a deep depression. His neighbors recognized that the farmer was in pain, was struggling to continue his physically strenuous work, and lived in fear of stepping on another mine. The neighbors pooled their resources and bought the rice farmer a cow so he could become a dairy farmer instead. His depression lifted as a result.

The story of the cow highlights the importance of community in treating mental illness. Mr. McCollum does not belong in a prison for the criminally insane. He belongs in treatment and he needs his community to step up and “buy him a cow.” Mr. McCollum’s distress and mental illness is situational: it is caused by his community rejecting him and then repeatedly punishing him for following his dreams and pursuing the one career he found he could excel in. Even when he helped authorities make the subways secure after the tragic acts of terrorism on September 11th, 2001, he was punished for sharing his extensive knowledge and working to make New York safer.

All his life it has been Mr. McCollum’s dream to serve the people of New York and he has demonstrated his loyalty and devotion again and again only to be slapped down and punished again and again. Who among us would still be alive after decades of such a life? Mr. McCollum is a strong man and instead of punishing him I feel he should be helped in the hopes of ultimately permitting him to serve the people of New York or some other metropolitan area. With therapy to help Mr. McCollum address his impulsive nature and social services to help him adjust to life in the community after spending so many years behind bars, perhaps Mr. McCollum could graduate to working as a transportation professional — if not in New York City, in some other major city. If not as a driver, perhaps in a related capacity such as museum worker or service technician. His transportation skills and his deep passion for the machines of transportation and for serving the community are Mr. McCollum’s “cow.” Can’t we do everything in our power to build Mr. McCollum up rather than close the final jail door on his life?

Thank you for your time and consideration.

Maxfield Sparrow

Why Do So Many Autistic People Flap Our Hands?

January 24, 2018 / unstrangemind

This is an edited re-posting of a blog post that originally appeared on June 9, 2014.

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[image description: rainbow colored hands in silhouette, upraised and reaching out with joy.]

The saying goes, “if you’ve met one Autistic person, you’ve met one Autistic person.” That was really hammered home for me today as I watched a short video in which an Autistic man explains why Autistic people flap our hands . . . . and pretty much nothing he said matched up with my own experience. A few of the things he said even bothered me.

My intention is not to erase what he said, however. His view of why he used to flap his hands is just as valid as my view of why I still flap my hands. There are many ways of being Autistic.

(Since the video was not captioned, I took the time to make a transcript of it for those who can’t hear or understand it. That was fortunate as the original video was removed from YouTube.)

The video explains, “It comes down to repetition. When we, as people with Asperger’s, are in a really unknown situation or we’re in a situation where there’s a lot of anxiety […], there’s a lot of stress, the way that we manage that, is because generally it’s overwhelming we do repetitive motions, because then we at least know, hey, if I do this I have complete control over it. And I know that whatever I do, I have complete control and it’s going to happen the same time every time. Therefore, I get a little bit of comfort from it.”

This does not even begin to describe why I flap my hands or make other “Autistic movements.” If I were to do that, I think it would be fair to say that we would be here for a while. This is something that I just do and is what I always have done.

All of these have been known to help people relax and calm down when they are experiencing emotions that are out of the ordinary, something that I have to deal with frequently, which is where you will start to see the hand movements. So, yes, I flap in stress. I flap in overwhelm. I flap when I get hurt. The video presents hand flapping as if it only occurs as a result of stress or anxiety, however, and that is not at all true for me.

I flap my hands when I am happy. I flap them when I am content. I flap them a lot when I get excited about something. I have as many different ways of flapping and twisting and ruffling and fluttering my hands as I have emotions and emotional combinations that wash over and through me. My hands are like barometers of my emotional climate.

There are plenty of things I do to try to increase the amount of control in my life, but flapping my hands is not really one of those things. I don’t flap my hands to have something reliable and constant in my life. I fill that need with other things, like small stuffed animals I carry in my pocket or ritual ways of doing certain things. For example, there is a little ritual to how my boyfriend and I say good night in the evening and that ritual comforts me, gives me a sense of stability and predictability in my life, and helps me to make the transition from visiting with him to being alone again. I do other things like always removing the ice cube trays from the freezer in the same order, always putting the same number of ice cubes in my glass, always walking or bicycling the same route to get places, always brushing my teeth for the same number of minutes every night, and so on.

These things serve my need to have a predictable, orderly world that is under my control as much as possible. The more I am able to feel a sense of control over my life, the calmer and happier I am. I suspect this is true for most or all people, but it is quite extreme in my case. Something small, like not getting my usual seat, or having the water turned off for twenty minutes in my apartment building in the middle of the day with no warning, can make me feel like my world is coming to an end. I am always fighting back the forces of chaos. But I do not wage this war with hand flaps.

The most common reason for me to flap my hands is that I am very happy and excited about something. My boyfriend told me that he loves to see my hands flap because there is a lovely joy that goes along with it that is fresh and appealing, without guile or artifice. If I recall correctly, he used the word “childlike” and meant it in a beautifully loving and respectful sense. Over the month of December, we went through a Jacquie Lawson advent calendar together every morning right after having breakfast together and he got to see lots of hand-flapping on the days when the calendar surprise was a steam locomotive or a peacock spreading his bright tail feathers or a mansion kitchen staffed entirely by giant teddy bears.

I’d see these things that made me really happy and excited and there would go the hands. By the time I was aware that I was flapping my hands, they’d already been going wild all on their own without my awareness. My hand flapping is so often an expression of sheer, unadulterated joy — pretty much the exact opposite of what is being taught in the video. Asperger Experts says, “it’s basically a giant signal saying, “hey! I’m not comfortable right now. Things are too much pressure or too much, just, overwhelm of sensation to the point that I need to do something to feel better about it.”

Yes, I can feel pretty overwhelmed by joy! But the kind of flapping I do when I’m not comfortable and suffering is another kind of hand flap. It’s a whole language of flaps and twists and shifts and strokes and claps. My hands speak my emotions so clearly, but only to those who are willing to learn what they are saying. My hand flapping is not a single message of suffering. It is a multi-faceted expression of my complex and beautiful emotional life.

As an alexithymic, I’m not usually aware of my emotions. So I even watch my own hands flapping away to help me understand what emotions I’m experiencing. I am “blind” to my emotions — I have emotions, usually very strong ones, but I am unable to know what I am feeling so I have to play detective and watch my body for clues. My hands are always telling me what I am feeling. Without my hand flaps, I would not be anywhere near as connected to my inner life. Without my hand flaps, I would struggle so much more every day, just trying to understand what my body and spirit were experiencing. My hands are my teachers and they educate me about my deepest self every day.

While I feel as if my three-dimensional experience of hand flapping is described in a very one-dimensional way in the video, that’s not what really bothered me about the message. I was bothered by the way hand flapping was presented as something bad, undesirable, ridiculous looking, and mainly restricted only to small children. The video admitted that hand flapping is necessary, but presented it as something annoying and embarrassing that should be substituted as quickly as possible with something less visible, like repetitive thoughts.

“You shouldn’t just try to stop it because then they’re just going to find some other way of gaining comfort. […] All of a sudden, they might gain a tic, like [clicks tongue several times] and then that’s just even more annoying.”

No.

You shouldn’t try to stop hand flapping because it is part of who we are. Would you like it if everyone were trying to make you stop smiling? Or tucking your hair behind your ear? Or putting your sunglasses on top of your head? Or crossing your legs when you sat? That is what people are doing to us when they try to make us stop flapping our hands: they are trying to force us to stop moving in ways that are natural, healthy, and comfortable to us.

(And when I say “we” and “us,” I mean those of us who do flap our hands or otherwise naturally move in different ways from the rest of society. Not all Autists move in the same ways and that includes the fact that not all of us rock or flap or spin (although the vast majority of us do) so don’t assume someone is not Autistic because you don’t see them moving in different ways. Or they speak. Or hold a job. As I always say, there is no one way of being Autistic.)

This video presents hand flapping as a necessary evil — something that is annoying but has to be tolerated because we do it to soothe anxiety and might end up doing something even more annoying if we’re forced to stop. In my opinion, hand flapping is a fundamental manifestation of the native nervous system of those who flap. It is how we are built, it is what we do. The focus should not be on whether it “might look ridiculous” or whether it’s better to “[transition] into listening to the same song over and over again, [or] say the same thing in [one’s] mind over and over again.” the focus should be on building a society that understands that we don’t all move our bodies the same way and that’s okay.

“You know, you don’t see many people that are forty doing this [waves hands].” I am fifty and I flap my hands. Many of my friends who flap their hands are older than me. I know people in their twenties, thirties, forties, and fifties who flap their hands and even someone in his seventies who flaps his hands. It’s okay to move differently from others. It’s okay to have a different neurology and it’s okay to be who you are.

There is a much worse risk that comes from trying to suppress hand flapping than developing an “annoying tic.”

When I was a child, I felt like there was no place that was safe, no place where it was okay to be who I am, no place where I could just relax and be myself. Everybody was trying to give me the advice of “just relax and be yourself,” but when I would actually do that, I would be yelled at, criticized, punished, bullied. I lived in fear and anger because nothing I did, no matter what, was ever right or good enough. At school, I was bullied by the students and even by many of the teachers.

At home, I was blamed for the bullying and told I was bringing it on myself. In a misguided attempt to shape me into someone who would not deserve to be bullied so much, all my mannerisms and stims and quirks were under attack. I felt like I was constantly picked apart for behaviors like walking on tiptoe, clearing my throat, flicking my fingers, spinning around, talking too loudly, grunting instead of talking, and so on. I spent . . . wasted . . . so much energy and focus on trying to make my body and face and voice do all the proper things. But no matter how hard I tried, I kept always doing something wrong and getting called out for it.

As a result, I was filled with so much anger toward everyone around me and so much self-loathing. I felt like nothing I did was ever right and I had no place to relax – school was filled with bullies and home was filled with picking apart my stims. I grew to hate everyone and often would lose myself in bitter daydreams with imagery I don’t care to re-visit now. My whole life was torment and I was in agony. This is the reason to let Autistic people be, not the fear that they might develop new behaviors that are even more annoying to the people around them.

The video’s reason for tolerating hand flapping was all about what makes other people feel okay or uncomfortable and had almost nothing to do with what the Autistic person wants and needs. Hand flapping almost had to be defined in that very one-dimensional manner, because if hand flapping is nothing but a comfort for excruciating anxiety, it is easier to decide to tolerate the “annoying” and “ridiculous” behavior, but if hand flapping is something that can be a sign of happiness as well as of more difficult emotions it’s harder to justify allowing people to be “annoying” just because they are happy.

But the problem is not with the hand flapping. The problem comes when the decision has been made that hand flapping is annoying or weird and not natural and adorable (which happens to be how it appears to me. I love to see people hand flapping! It makes me happy to see someone making a happy hand flap.)

The makers of the video may be Asperger’s Experts, but they are most surely not Maxfield Experts, because I’m not at all like what was portrayed in that video and I have many Autistic friends who are similar to me. Of course some Autistic people must resemble the portrait that was painted by the educational video purporting to explain hand flapping because that is how those two young men experienced their own Autistic movements. I don’t want to erase their voice when raising mine. But I also want to make sure their message is not the only one available to people.

So, as I said, the lesson here is that if you’ve met one Autistic person, you’ve met one Autistic person. There is not just one way to be Autistic. I’m sure the makers of the hand flapping video were expressing the truth about what being Autistic is like for them. Just be careful to remember that no one (including me!) speaks for all Autists. It is a pretty safe bet that there are also Autists out there who aren’t like the description in the video but aren’t like me, either.

So when you see someone flapping their hands, don’t make assumptions about what it means. There are some meanings that are more likely and some that are less likely, but better than guessing — better even than statistically-backed guessing — is getting to know the individual Autist and learning what hand flapping means for them. Engaging with humans is almost never a one-size-fits-all scenario. We Autists are individuals — it’s good to learn general autism data, but “at the end of the day” there is no substitute for learning the language, including the body language, of the special person in your life. Or of yourself, if that’s how it’s all playing out for you.

But no matter what the flaps mean where you are, I do hope you will take one thing seriously that I said: don’t hate on the flaps, don’t be afraid of them, don’t judge them so harshly. Learn to live with the hand flaps because they are a good and useful thing for Autists, no matter what purpose they serve for each individual Autistic person. And, who knows: if you don’t already, there may come a day when you begin to see the beauty in hand flaps. Hand flapping and other Autistic stims are quite exuberant and lovely if you remember that they are a person’s heart and spirit made visible in time and space for all to behold.

Friendship, Support, and My Inner Circle

July 12, 2017 / unstrangemind

I’m going through an intense and exciting time in my life.

Like most (all?) humans, I am greatly enriched by any and all support during this intense time of great change. And I am blessed to have so much support and so much love from others.

I want to talk about layers and intensities of friendship and love from my Autistic perspective. This is just me — other Autists might be different, so don’t assume that I’m telling you some kind of universal Autistic thing. Take my experience as a first step in asking questions and working to understand yourself or the Autists in your life.

The phrase “inner circle” has a lot of meaning to me because I have a small but very important inner circle. My inner circle consists of one or two people with whom I am engaging in a deeply intimate and trusting manner. I seem mainly to only be able to hold one person in my inner circle at a time, although for the last couple of months I was holding two people in there. It was very difficult and I found myself feeling like I was oscillating between the two people in my inner circle.

I credit (whether accurately or not) my Autistic neurology for my very small inner circle. I have tried to expand my inner circle and I just can’t. This is the place where a best friend and/or a lover fits into my life. While I admire polyamory, I have not been able to engage in polyamory myself because trying to fit more than one person into my inner circle causes struggle. Trying to fit more than two people into my inner circle causes tragic implosion. It might be possible, but it turns out to be highly ill-advised for me. Growing up, I wasn’t even able to hold both my mother and my father in my inner circle at the same time.

Because my most inner circle of friendship is this tiny demitasse cup, most of my life my best friend, mentor, and closest confidant has also been my lover. This is dangerous. The saying is “don’t put all your eggs in one basket.” Problems arise when everything is poured into one person. There is so much opportunity for abuse (in either direction). It is more likely that too many of my needs will get heaped on the one person who will get burned out as a result. If that one person withdraws their presence from my inner circle, the vacuum they leave behind can be devastating.

There is another difficulty that comes from having a demitasse inner circle. I have noticed a pattern. There is a type of person who understands how to climb right into my demitasse — even, sometimes, to the point of displacing someone else who actually belongs in there — almost immediately. Once in there, they enjoy all kinds of fun and games at my expense (and usually to my great confusion and consternation as well) and then either they lose interest and drop me cold (leaving me to suffer that vacuum of the sudden absence of a person who I had allowed in to the most inner chamber of my being) or I begin to awaken to the toxic nature of what I have been allowing to happen and I evict them myself.

(I’ve also had people inexpertly try to break down the door to my inner circle but get held at arm’s length due to their clumsy attempts to manipulate me being so obvious. This sort gets angry and bludgeons me in some way for refusing to allow them entry. The last person who did this to me ended up sending the police to my door because I didn’t answer their text for 45 minutes.)

I try to be an open person. There is risk there. People slip into greater intimacy than I should be allowing them. Some of them use or hurt me. I am learning how to guard against that. There is also a great risk in being a closed person. In closing myself off and not letting anyone in, I may be impoverishing myself and not discovering who I am. But yes, human contact is important to me. One big reason I adopted a nomadic lifestyle was so that I could expand my world by meeting more people.

Anyway, I have other levels of friendship. The next level is pretty big and I have a lot of people in there. Some of them I don’t talk to for weeks or months at a time but when we connect again we pick up the conversation as if only a moment had passed since the last things we said to one another. These are people I love deeply and am deeply grateful for. Then there is a huge swath of acquaintanceship with a great many people with whom I have limited interactions. They are people I admire and respect but we have a connection that I consider to be more “surface” (although, compared to how I see friendship discussed by others, I suspect my “surface” is still pretty “deep” for most people. I credit Autistic neurology for this, too. We don’t tend to do chit-chat.)

But that innermost level…I have not made the best choices about who I allow in there. I have accidentally ended up with someone marvelous in there, and been very grateful. And I have accidentally ended up with someone destructive in there. Sadly, the latter has happened more often than the former.

I have been doing a lot of thinking lately about my inner circle and how vulnerable this model of relating can make me. Times, when I’ve had no one in my inner circle, has been bleak and desolate. But I’ve been wondering whether that is necessary. It certainly isn’t desirable.

And what I’ve been thinking about most is this:

Can I be in my own inner circle?

And I think that question is key to a personal breakthrough.

A Close Call with a Whole Gale Storm

May 30, 2017 / unstrangemind

[image description: two heavy metal folding tables held together by chains to prevent theft. The tables are heaped in a darkened parking lot, where the wind casually tossed them after they nearly crushed Sparrow. Photo copyright Sparrow Rose, 2017.)

Natchitoches is the oldest settlement in Louisiana and it’s a lovely little town with colorful stucco buildings sporting second-story verandas with ornate wrought-iron railings, brick streets, and towering magnolias and live oaks. The house from Steel Magnolias is here, as is an alligator feeding show I was eager to check out. It looked like a perfect place to pause for the Memorial Day weekend, to catch up on work before heading toward Houston. Little did I suspect I would find myself in a life-and-death battle here Sunday night.

There was nothing remarkable about the day. The weather seemed fine, if extremely humid. Sunset was due in about 20 minutes. I was reading a novel about the mother of an Autistic boy (I’ll be reviewing that soon on Thinking Person’s Guide to Autism) when my weather app, Dark Sky, flashed an alert on my screen, letting me know that heavy rain was coming in ten minutes.

I had a couple of quick chores I needed to do that were unpleasant in the rain, so I quickly did them: I filled my water jugs and emptied my trash, including cleaning the cat box, thinking how nice it would be when the rain came and cooled everything off a little. I was parked on the east side of the Walmart and when I took the trash to a trash can, I could see past the store to the western sky which was dark grey with a huge wall cloud filling the sky.

I returned to the minivan and the bulk of the Walmart hid the western sky from my sight once more. The rain started almost right away. I congratulated myself for getting everything done in time to stay dry. My self-congratulatory mood didn’t last long.

The rain came down so hard that the parking lot was filled with inches of standing water. Heavy winds began bringing wave after wave of water rushing toward me. The van began to rock with the impact of the wind. I decided to check my weather app to get a better idea of the storm’s intensity and expected duration. What I saw chilled me. Tornado Warning – funnel sighted, take cover immediately. If you are in a vehicle, leave and seek shelter right away.

I quickly typed “Shit. Tornado warning.” on Facebook, thinking if the worst occurred, at least my friends would know why I had disappeared. Because I travel and spend so much time away from anyone I know, I regularly take measures to enable those who love me to help find me if something should go terribly awry.

I had to act fast. I quickly debated whether to bring my cat or not and decided to leave him. His smaller mass would protect him a little if the van went tumbling and taking him out into that solid wall of rain would not go well. He would have immediately clawed his way free and probably gone under the van. I wished him luck as I grabbed my phone, keys, and the festival pack I keep my money and identification in. I didn’t wait long enough to cram my keys and phone in the pack — I just opened the door and slipped out, locking it behind me.

The rain was pounding and thick. The wind was coming from the west, so I didn’t feel the full force right away because the building blocked some of it. But as I ran toward the Walmart, the wind lifted the two tables in the employee break shelter beside the building. Even with the building blocking the wind, it was powerful enough to pick up those two tables and send them hurtling straight toward me. I watched it speed toward me, a wall of certain death aimed right at my torso and head. I tried to move aside but the wind was so fierce it was like a solid object, unyielding.

At the last possible moment, a side gust of wind knocked me off my feet and turned the table into a curve ball, sending it veering off to the south. I scrambled, half-crawling, toward the building. The wind was too forceful to get past the edge of the building to the door. All the parking lot lights flickered and went out. I took advantage of a niche in the architecture where two walls came together and pressed myself into that corner, watching tree branches and other large, unidentifiable objects go flying past the building.

I had lost a shoe when I fell. Worse, I had dropped my keys. I scanned the ground in front of me as best I could through the storm but all I could see was wind-tossed debris. I knew I couldn’t go back out into the full force of the storm to look for my keys. All I could do was hope they couldn’t get blown into the next Parish before the storm ended. My immediate survival seemed more important than my keys, even though I had no idea how I would get back into my minivan — my home — without my keys.

I have no idea how long I stood there, squeezed into that niche. I took off my glasses, made useless by the rain, and tucked them in the pack. I typed some words of update on Facebook, then tucked my phone in there, too. With everything secured, I made another attempt for the front of the building and succeeded this time. With the power out, the sliding doors wouldn’t open! I was now out in the full force of the storm and stuck outside! I continued past the second door to take cover in the corner between the glass doors and the brick wall, a smaller niche but still some shield against the projectiles flying through the air.

A powerline directly over my head whipped back and forth ominously and I hoped it wouldn’t break loose and come down on me with a shower of sparks. It held. Debris continued to fly past me, mere inches from my face now.

Having nothing else to do but wait, I typed more updates on Facebook so people would know I was still alive. The people inside the Walmart forced the sliding doors open behind me and the wind pushed me inside the building.

Once inside, my nerves finally caught up with me. Everything had been too immediate to feel fear, anxiety, or panic while outside. Now my body trembled. The people inside seemed not to understand what it had been like, being stuck outside the building. I was counseled to never worry because Jesus is always watching out for me. “Well, eventually he will call me home,” I responded. “I’d prefer that weren’t today.”

While we waited for the storm to pass, everyone’s phone suddenly sounded an alert. I looked at mine and it warned of flash flooding. Knowing we were right on the river, I asked if the Walmart were on high ground and was reassured by many that the river would take days to rise high enough to reach us.

Finally the wind died down. I had to ask several Walmart employees before I found one willing to get a flashlight and help me look for my keys. He offered an umbrella but I was still dripping wet so I didn’t bother. Out we went into the rain, with lightning flashes so bright they briefly lit the parking lot as bright as day. I found my shoe first, which surprised me because I didn’t expect to find it at all. The employee found my keys and I was so relieved I hugged him in gratitude.

My van has some new dents and scratches from the shopping carts that were flung into it, but no windows or lights were broken, the solar panels stayed tight, the cargo carrier resisted the storm. Mr. Kitty gave me the “you’re back from the dangerous expedition!” meows, but quickly calmed down and set to his favorite hobby, eating. I counted six trees uprooted around the edges of the parking lot, massive roots exposed to the air.

Reports say the funnel cloud touched down about a mile past where I was. My research suggests this was the fourth tornado this town has seen in 2017, unless I missed one. The storm system was huge, stretching along the entire western half of the U.S. Gulf Coast. Only one person was killed.

Weather Underground tells me the wind was 60 miles per hour at the peak of the storm. For an idea of what that looks like, here’s a short video of a 60 mile per hour storm from about 6 years ago:

The storm I lived through Sunday night was a 10 on the 12-point Beaufort Wind Force Scale, also known as a whole gale. At sea, it would have created 30 to 40 foot waves. A hurricane, ranked 12 on the scale, comes with winds above 73 miles per hour.

Today I am grateful to be alive and more respectful of the power of sudden storms than ever before. I have lived through a few tornadoes, but always inside a solid house, never outside. Winds that high are like a solid mass with an irresistible force. My life was at risk, but the wind also saved my life when it picked me up off the ground and dropped me, just in time to miss getting hit by those tables that whisked past my head.

I have talked before about how calm I can be in a true crisis. My autistic neurology sends me into a panic when little things go wrong, but every time I have been in a genuine crisis situation, I have been the calmest person on the scene, guiding people who are standing frozen in their tracks to call for an ambulance, enacting or instructing others in emergency first aid for injured people, putting out fires, finding that one elusive, clever way out of the path of disaster bearing down. When seconds count, I tend to think fast and fall apart later.

I have talked to other Autistics who express similar wiring and related experiences. It’s strange to think that so many of us are people who might get so upset we melt into an emotional puddle because someone ate the last of the breakfast cereal while we were asleep yet when quick thinking matters, we rush forward to save ourselves or others.

My Sunday night could have been a lot worse than it was. But when I think back over it all, I am pleased with my choices. I didn’t see anything I recognized as alarming about the sky — now I have a better idea of what a wall cloud (something I had never seen before) can bring. I am used to the sky turning green before a tornado, but my previous tornadoes were all in Kentucky. Weather is a bit different down here, it seems. Overall, I made fast, good decisions under pressure.

May I never experience sudden severe weather again. But if/when I do, I feel much more confident about my ability to spring to action when the going really gets rough.

The Protective Gift of Meltdowns

May 10, 2017 / unstrangemind

[image description: a terrapin in the middle of the road on a hot, sunny day. His skin is dark with bright yellow stripes and his shell is ornate, covered with swirls of dark brown against a honey-yellow background. The terrapin is rushing to get across the street and his back leg is extended from the speed and force of his dash toward freedom. photo copyright 2017, Maxfield Sparrow.]

I hate meltdowns. I hate the way they take over my entire body. I hate the sick way I feel during a meltdown and I hate the long recovery time — sometimes minutes but just as often entire days — afterward when everything is too intense and I am overwhelmed and exhausted and have to put my life on hold while I recover

I hate the embarrassment that comes from a meltdown in front of others. I hate the fear that bubbles up with every meltdown. Will this be the one that gets me arrested? Committed? Killed?

Meltdowns, Like Shutdowns, Are Harmful But Necessary

We Autistic adults and teens put a lot of energy into figuring out what will lead to a meltdown and working to avoid those things whenever possible. Parents of younger Autistics also put a lot of energy and work into figuring these things out, both to try to keep triggering events out of their child’s life and to try to help their child learn how to recognize and steer around those triggers themselves. Outsiders who don’t understand will accuse us of being overly avoidance and self-indulgent and accuse our parents of spoiling and coddling us.

I have written about how shutdown can alter brain function in unwanted ways. Meltdowns also have their dangers and can alter brain function over time. A meltdown is an extreme stress reaction and chronic stress can damage brain structure and connectivity.

But meltdowns serve a purpose, just as another unpleasant experience that can also re-wire the brain if it continues chronically and unabated — pain — also serves an important and very necessary purpose.

Pain is an alarm system that helps us avoid bodily damage and urges us to try to change something to protect our body. While pain is usually unwanted and something we seek to avoid, without pain we would not live very long because we would not have such a strong drive to eliminate sources of damage to our bodies.

Meltdowns are alarm systems to protect our brains.

That idea is so important I gave it its own paragraph. And I’ll say it again: without meltdowns, we would have nothing to protect our neurology from the very real damage that it can accumulate.

So often, I see researchers and other writers talking about meltdowns as if they were a malfunction or manifestation of damage. I strongly disagree. It is easy for someone outside of us to view a meltdown that way because they see an unpleasant outburst that makes their lives more unpleasant or difficult to be around. They see someone who appears to be over-reacting to something that’s not such a big deal as all that. They see someone immature who needs to grow up, snap out of it, or get a “good spanking” to teach them to behave.

When someone doesn’t experience the hell it is to be the person having the meltdowns, they can easily misunderstand and misjudge what it actually happening.

Meltdowns Are A Normal Response To Sensitivities

Let me ask you something: this is a thought experiment and you don’t have to actually do this, but you might understand better if you actually follow along physically. Take your finger and poke the softer flesh on the inside of your thigh with it so that you are pressing the tip of your fingernail into your thigh. Don’t actually damage yourself! You’re just looking for a reference sensation. Poke it about as hard as you might press a button to ring someone’s doorbell.

If you have long, sharp fingernails that might have hurt a little bit (I hope you were careful. The goal here is not to injure yourself — just to create a physical sensation.) It was a quick poke, so it probably didn’t even leave a mark behind, no matter how long your fingernails are.

Now do the same thing to your gums, either above or below your teeth, in that area between your teeth and the inside of your lips. Oh! You couldn’t even poke it as hard, could you? Do be gentle with your gums, please. I repeat, this is not about harming yourself. You don’t even have to poke yourself at all if you don’t want to. You know your thighs and gums. You know without lifting a finger that I am telling you the truth when I say your gums are much more sensitive than your inner thigh.

And you are not “over-reacting” when you have more pain response in your gums than in your thigh, right? It’s easier to hurt your gums so your reaction to the same stimulus is much more intense when it is applied to your gum than to your thigh. You are not self-indulgent or spoiled. You don’t need a good spanking to get over how sensitive your gums are. You just need to take extra care that things don’t poke you in the gums.

So what’s my point? If you are not Autistic — and even more so if you are pretty close to neurotypical — your neurological wiring is more like your thigh. Life pokes at you a lot and you don’t even notice it. Much of life’s poking is fun for you. Some pokes are less recreational but present satisfying challenges. So when you see an Autistic person having a meltdown you might not even recognize the pokes they have been processing all day long because you don’t even feel them.

But our Autistic neurological wiring is more like your gums. Except not even that predictable. Some of our senses may be “hyporesponsive” and we need to stimulate them to be aware that they are even functioning. Some of us spin around or pace in circles. Some of us move our hands or fingers in ways that make us feel better. Some of us blast loud music with a heavy bass and drum component to it. Some of us rock back and forth. Our wiring demands more input than the world’s regular pokes can give us.

Some of our senses are “hyperresponsive” and we need much less stimulation. Life’s pokes are like fingernails grinding into our gums and we need to make it stop because we cannot bear the pain. Loud sounds or high-pitched sounds get to some of us. Others are overwhelmed by the struggle to understand speech when more than one person is talking at the same time. Some can’t stand textures of fabrics or foods.

Most people I know are a complex mixture of hyporesponsiveness and hyperresponsiveness. Most people I know have some senses that are both hypo and hyper responsive, changing over time. I can’t give you any single idea of a sensory pattern for an Autistic neurology because we each have our own combinations of needs.

Normal Human Variation Includes Variant Emotional Sensitivity Levels

But when it comes to meltdowns, it’s not just sensory input (or lack thereof) that will set off an Autistic’s neurological warning system and throw us into meltdown. What inspired me to write about this topic today was reading something I had written a year ago. I spent a few months living in an emotionally abusive situation last year. The man I was living with for a brief time figured out very quickly how to manipulate my compliance triggers. He even commented specifically on how easy it was for him to physically subdue me once he spotted the compliance “fish-hooks” that childhood had left embedded in me.

I’m not going to go into much detail about what he did for the same reason that I shy away from going into much detail about my decade of childhood therapy. I am working on removing those hooks from my flesh. The last thing I want to do is instruct others as to where those hooks are embedded and how to use them to steer me like a puppet.

My point in mentioning the incident at all is that I realized after the fact that my meltdowns had been sending me a very clear message I should have heeded immediately. Instead, I did what I always do: I interpreted my meltdowns as a sign of how damaged I was and how much I needed help to gain self-control. Most of my life, I’ve allowed lovers to convince me to try to medicate my meltdowns into submission. I have hated them because they seemed to illustrate how flawed and awful I was. My thought process went like this: I melt down because I’m Autistic and meltdowns are frightening and horrible and who would want to be my romantic partner? I can’t blame people for treating me badly and wanting to get away from me because look at these meltdowns!

My experience last year helped me to finally realize that I was looking at things backwards.

I don’t melt down because I’m Autistic.

I melt down because something in my environment is intolerable and I am having a normal reaction of pain and/or anxiety. That pain can be from something physical, like an intolerable temperature in the room or a sound that is piercing my eardrums and making me nauseated. Or it can be something emotional, like internal feelings of frustration or external abuse.

Everyone has meltdowns. It’s not just an Autistic thing. But our wiring is different, just like the wiring is different between your thighs and your gums. Some things that make neurotypicals meltdown don’t bother me. A whole heaping lot of things that don’t bother neurotypicals make me meltdown terribly. I’m not deficient in some way; I’m wired differently.

Meltdowns Protect Us From Harmful Situations And People

One of the things I learned last year is that even when I can’t recognize abuse because I have alexithymia, even when I can’t recognize abuse because my compliance training is kicking in full force, my body and nervous system will send me the message with repeated meltdowns.

What I wrote a year ago:

If I have lots of shouting, freak-out, PTSD meltdowns when we spend time alone with each other, yes it’s an Autistic thing. But it also means you’re regularly doing something messed up.

An isolated meltdown could just be a random convergence of awful that has nothing to do with you, but if a pattern develops, you’re probably gaslighting me, mistreating me, abusing me, or generally taking nastily unfair advantage of that same autistic neurology that makes me unable to recognize I’m being abused or mistreated until I see the pattern of meltdowns.

All my life I’ve been told, and believed, that losing my shit was a personal shortcoming I should work to overcome.

I now realize it’s actually my body/brain’s alarm system letting me know something’s seriously wrong in my life. Something bad that needs to be fixed, like yesterday, if not sooner.

I finally realized all this today. Everything suddenly connected.

And in an instant, I no longer hate my meltdowns. I think I might actually love them. They protect me.

So… I still do hate meltdowns. More specifically, I hate having meltdowns. They are hard on me, physically and emotionally. They are embarrassing, messy, frightening.

But I am grateful that my body has a way to tell me when I’m in a bad situation, even if my mind is not capable of figuring it out yet. I vow to respect and honor my meltdowns. This is not the same as excusing my behavior. This is not the same as giving myself free reign to do whatever, whenever.

I still want to do whatever I can to avoid having a meltdown. I still want to work on my ability to detect a meltdown on the horizon and remove myself to safety before things go too far.

But I also vow to listen to my meltdowns and pay closer attention to my triggers. Meltdowns teach me what my nervous system can handle and what is too much for me. Meltdowns teach me how to take care of myself. Meltdowns teach me what my nervous system needs. Meltdowns highlight areas of my life that are not on track.

Sometimes my depression shows me that something is wrong in my life but sometimes depression is just like a wildfire, burning out of control. The same with anxiety. But I have learned that meltdowns are always highlighting something I need to address.

Meltdowns protect me. Some aspects of my neurology make me more vulnerable. Some remnants of childhood experiences leave me more vulnerable. Meltdowns fill that gap and send me messages about my life that can help me protect myself.

While I will never enjoy having a meltdown, I promise I will always value the protective gift meltdowns bring me.

How Autism Can Mimic Avoidant Personality Disorder

April 25, 2017 / unstrangemind

[image description: a sketch by Sparrow Rose. A rose, colored red, with different geometric patterns on each petal and the name Gertrude Stein inscribed on the green stem. The rose is superimposed over a circle of blue letters with the Stein quote, “A rose is a rose is a rose” encircling infinitely, like the plates Stein’s lover, Alice B. Toklas, used to sell.]

I stumbled across an article on Lifehack about Avoidant Personality Disorder this morning. I read through the article, alternating between, “yes, this is exactly me,” and “a mental disorder is only a disorder if it’s not true. You’re not paranoid if they really are out to get you.”

Finally I got to the section that said:

“What is known, however, is that symptoms first start manifesting from infancy or early childhood. The child will display shyness, isolation, or discomfort with new places or people. Often times, children who do exhibit these tendencies grow out of it, but those with the disorder will become even more shy and isolated with age.”

That clinched it for me. I do not have Avoidant Personality Disorder if it is something that develops in childhood. It is not to say that someone else would not have both autism and Avoidant Personality Disorder at the same time. I am not a medical or psychological professional, so I can only talk about my own experiences and perceptions here in the hope that it will help others feel less alone or maybe give someone new things to think about and new avenues to explore.

I effectively have a mimickry of Avoidant Personality Disorder, caused by 50 years of being bullied by others. I have carefully studied the bullying and done whatever I could to make it stop. I have changed the way I dress, the way I wear my hair, my grooming habits. I have tried Dale Carnegie’s methods outlined in his book How to Win Friends and Influence People, I have tried sticking with social groups that center around my interests, I have tried surrounding myself with only fellow Autistics, I have tried blending into the background, and I have tried saying nothing at all ever.

The bullying will never stop. After half a century of it, I have come to realize this. It doesn’t stop when you grow up, or when you go to college, or when you find a job, or when you find work that you are good at, or even when you find a community of people who are similarly brained and have all grown up with the same crushing bullying themselves. It never stops and the only place where there is no bullying is alone.

I’m not saying this to get your pity. As graffiti in an ADAPT video says, “piss on pity.” I am saying it because it is a solid fact that needs to be acknowledged. No amount of zero tolerance policies can police the bullying away. No amount of social skills training can teach the victim how to stop being whatever part of who they are that attracts the bullies. The only way to stop the bullying is to stop letting bullies have access.

Temple Grandin does it with money — she has enough money to pay people to form a human shield around her so that she can live in a bubble where bullies are not permitted entrance. I don’t have that kind of money and am not likely to ever have even a fraction of that kind of money . The only way I can build a bully-free bubble in my life is to emulate Avoidant Personality Disorder. It wasn’t a conscious choice on my part … inch by inch, the bullies drove me back into myself. Like a slinking night creature, I have crept further and further from the glowing campfires of humanity and into the safe and soothing darkness of solitude.

Those who counseled me to “just put yourself out there” are complicit with the bullies. Those advisors have encouraged me to boldly stride behind enemy lines, unarmed. Sometimes they even blamed me for the shelling I received as a result.

When I tell people about the bullying, I get a few different reactions. One popular answer is to tell me I’m bringing it all on myself. If I just weren’t so … If I didn’t insist on always … If I’d just stop … And why can’t I blend in better?

Another answer I get is that I’m blowing it all out of proportion. Everybody gets teased. It’s part of how people make friends with each other and I just need to lighten up a little and learn to laugh at myself.

Some well-meaning people tell me that they can’t see how anyone would want to bully me because I’m such a kind and gentle, loving person. The thing is, whether I’m kind or whether I’m a jerk, the bullying is real and denying it could be possible is calling me a liar when I tell you that it does happen.

Let me talk a little bit about the traits of Avoidant Personality Disorder from the article — the traits that caused me to briefly question whether I might have Avoidant Personality Disorder or not. (I don’t. Through most of my childhood, I virtually flung myself at others. I am an extrovert and I spent my 20s seeking out human company all the time, alternating between hope and despair. It has only been in middle age that I have begun giving up and avoiding people. The accumulated years of bullying have finally weighted me down sufficiently to provoke an avoidant, hiding response to life.)

Reluctance to be involved with people unless certain they will be liked.

This has been me for a long time. Lately I’ve been feeling pessimistic enough about people liking me that I’m reluctant to be involved with anyone. This is not just the depression talking (although that’s a contributing factor, for sure.) I have gotten enough screen shots handed to me of people who smile to my face and then talk hate about me behind my back that I’ve learned not to trust anyone.

But even before I reached this critical mass, I have had a tendency for years to assume the worst. If someone is not clearly welcoming toward me, I assume they are just tolerating me and I try to go away before they reach the end of their tolerance. This is learned behavior on my part. After experiencing the same thing again and again, my pattern recognition finally kicked in. It is other people’s behavior that has taught me that someone who does not make it clear that they enjoy my presence might eventually “snap” and start abusing me because I didn’t get all their hints. Hints that I can’t see.

I can see people welcoming me and I can see people abusing me, but I can’t see all those little nudges and hints and insinuations and sarcasms, and social corrections. So when people aren’t clearly welcoming, it’s an act of self-preservation to go away before the abuse starts.

Takeaway lesson: if you appreciate an Autistic person, make sure to let them know. Take the emotional risk. Tell them that they’re wanted and liked or loved. You might embarrass them, sure. But you will also be engaging in clear communication that lets them know they are wanted and should stick around.

Avoidance of activities (whether professional or personal) that would require significant contact with others due to fear of rejection or criticism.

I just quit a job last week. I won’t pretend it was the greatest job ever. It was a job that claimed to pay $8.10 an hour and, technically, did. But it had such a draconian break policy that the realistic pay for the time I was required to be at their place of business in order to get my work done was more like $4.05 to $5.40 per hour.

But even with that, I needed that job. Four bucks an hour ain’t much, but money is money and I’m a little bit addicted to eating. So is my cat.

But the bullying was so crushing, I had to leave before the bullies stripped me of the shreds of self-preservation I had left.

The ringleader set me up so perfectly. He started out being very interested in what I had to say. He encouraged me to talk more. He found opportunities to get me alone to encourage me to open up even further, one-on-one. He showed interest in my writing and even started reading my book. He had gotten five chapters into it by the time I left.

I came to be deeply emotionally invested in him and his circle of friends. And then one day, when the hooks were good and set in me, he turned on me. He shouted at me. He called me names. And his friends began to perform live theater in front of me — imitating me, my movements, my way of talking, my favorite subjects. But all of it embarrassingly exaggerated, grotesque, and insulting.

I couldn’t even walk through the hall at work without getting waylaid and berated. I started hiding in my car, missing hours. I was falling behind in my hours and the boss said I had to make them up. I would have had to live at work all day long to make up those hours but the C-PTSD from all the years of bullying in school had kicked in at full force and my bullies started making a point of surrounding me. We could sit wherever we wanted in the workroom and I would quickly become surrounded by my bullies who would stare at me while they talked to each other and laughed.

I know it doesn’t sound like much. But try it some time. Life gets pretty grim when the only people you are ever in contact with are so clearly targeting you. I was becoming suicidal. I couldn’t possibly make up those lost hours. In a last ditch effort to save my life, I quit.

Significant contact with others is not viable for me. I have to meter my contact with people. It doesn’t take long before they realize I’m only there to be their punching bag. Places I can’t retreat, places I can’t hide — these are dangerous places full of bullies I can’t escape.

Takeaway lesson: If you know an Autistic who doesn’t want to go someplace, take them seriously. Investigate. Empathize. Don’t just decide they’re being lazy or willful. There’s a good chance they’re being damaged by that place and what happens there. Don’t jump to automatically contribute to the damage by forcing them to be there. Find out what’s wrong.

Unwillingness to try new things due to shyness or feelings of inadequacy, particularly in social situations.

My feelings of inadequacy in social situations are very real. I am not suffering Avoidant Personality Disorder – I am suffering humanity. People are cruelly unforgiving of those who cannot figure out the social rules and conform to them. People are exploitative of those who struggle to conform to the social rules and thus are easy dupes for con artists.

Yes, I am unwilling to try new things, so long as there are people involved with those things.

I saw a pair of roller skates I really like and would get if I had income, but I don’t want to skate with other people. I would love to spend more time hiking on trails but only if I can go alone. I love camping but I don’t want to camp with others. I’m interested in trying new kinds of writing, new art techniques. I’d like to play new musical instruments. I love learning languages but am limited in how far I can go because I don’t actually want to have a conversation in any language.

I am always open to the new experience …. but only if I can do it alone, without observers, without companions, without bullies.

Takeaway lesson: if you know someone Autistic who doesn’t want to try something new, don’t assume it’s “just the autism.” There could be other reasons. You might be the reason. If you didn’t react well the last times they tried new things, they might not want to try more new things …. when you are around.

Sensitivity to criticism, rejection, or disapproval.

Tell me what “sensitivity” means? Am I sensitive when I have been wounded again and again until I spend all my energy trying to spot the landmines and skirt around them? Is a soldier sensitive to Claymore mines? Is it right to call me sensitive after five decades of walking a never-ending social minefield?

Difficulty with building intimate relationships because of fears and insecurities.

I don’t trust anyone. How could I possibly build a close friendship or relationship when those connections are based on mutual trust and I have long since run out of trust?

I watched 13 Reasons Why and I could understand why Hannah became so guarded. After enough abuse had been heaped on her, she could never have dated Clay because she had lost the ability to trust that anyone could possibly like her and want to be with her just because she was a great person. Everyone abused and exploited her and then sneered at her as a “drama queen” when it was their treatment that had caused her to become so distressed in the first place.

This is what we do to victims of bullies. We look at the depressed, broken shells they have become and we blame them for it, telling them that their brokenness is why they are bullied.

It’s like telling someone that they just need to stop bleeding and the sharks will ignore them. But it was the sharks that bit them in the first place and they will never stop their feeding frenzy until they have devoured all the blood. Bullies devour their victims and they aren’t even courteous enough to swallow them whole. They tear pieces off them. And more pieces. And then they get excited when they see the emotional blood leaking from the wounds and bite larger and larger chunks, hypnotized by their own power to destroy another human being.

Is anyone surprised at difficulty with building intimate relationships after one’s being has been shredded by the shark teeth of constant bullying? What about the fears and insecurities that are real? How much does cognitive behavioral therapy repair a person who is afraid of and insecure about something that has been happening every time they are around people ever? How much therapy does it take to erase fifty years of bullying?

Feelings of being socially inept, inferior, or unappealing to others. As a result, there are tendencies to have extremely low self-esteem.

I wonder about this. Self-esteem, that is.

All my life, I have been told that I have low self-esteem. I can see why people would say that. I don’t “put myself out there.” I look at the ground when I walk (Partly because I don’t want to accidentally make eye contact with anyone but just as much because I need to see the ground. I have bad balance and low proprioception. If I can’t see the ground when I walk, I fall and hurt myself.)

Does it sound like low self-esteem when I say I am pathetic at making and keeping friends? Is it still low self-esteem when it’s the truth?

Does it sound like low self-esteem when I say that there just aren’t enough accommodations to make it possible for me to keep a job (I was kind of doing okay at the last really crappy and underpaid job until everyone decided to team up to make my life hell for their amusement) and that I struggle with poverty as a result? Is it low self-esteem when the truth is that my multiple disabilities get in the way and I really can’t support myself financially?

I don’t actually think I have low self-esteem. I am not happy with my body (who is?) but I know there is hope that I will be able to afford medical transition some day and I can finally feel at peace in my skin. But I also know I am more than just my body and I love the way I solve problems and puzzles. I love my musical talents. I’m still learning to draw, but I’m very proud of how quickly I’ve learned and how fast I ‘m progressing. I am proud of my writing skill and pleased to see that skill improving all the time. I am a compassionate, empathetic, kind-hearted person. When I am not depressed by poverty and bullying, I know that I matter. I help people all the time. My heart is filled with love. I feel at home in nature. I am a good person.

If I really am socially inept and unappealing to others (except as an amusing punching bag), is it fair to call my reaction of despair “low self-esteem”? It sounds like the problem is being centered in me rather than in the people who go out of their way to make my life as miserable as they can get away with.

Takeaway lesson: telling someone about their “low self-esteem” that only cropped up as a result of being mistreated by others is just another way to blame the victim for suffering someone else caused.

Yes, I am avoidant.

No, it is not a personality disorder.

It is a matter of survival.

The recent bullying is so fresh that it took me four hours of sitting in my car in the McDonald’s parking lot yesterday to finally overcome my physical exhaustion and go inside to get some electricity for my battery and get a little work done.

Avoiding is the tip of the iceberg. Being avoidant is debilitating and not always for the reasons you might assume. I am so tired all the time. I am worn out from carrying the burden of bullying all the time. I am exhausted. There is so much I want to do — I have long lists of things I’m excited to write, draw, record. But I’m running out of steam. Survival is too hard. It’s ground me down. I’m wearing out.

The price of permitting bullying to continue is unreasonable — at least for me. Maybe it’s because the rest of the world doesn’t have to pay my price — and because they have no idea what I would put into the world if I just had a little more energy — that they don’t care much about stopping bullies.

You can do your part, though. Stand up against bullying. If you can do it without making too much of a target of yourself, speak up when you see bullying. You might have to watch for it, though. Bullying is all around you and you don’t see it.

In high school I was so bullied that classmates put sexual statements about me in the school newspaper. “That couldn’t be true,” my mother said. “It was a good school. They wouldn’t have let that happen.”

But they did it in code. That’s how they got away with it. People are being bullied all around you and you don’t even see it!

They started by telling me they knew I was selling sex. (Good grief! I was 13 years old!) and that they heard I did it under a bridge on Dixie Highway. (What bridge? There is no bridge on Dixie Highway. They picked that road because it was on the south side of town where I lived and they had already spent months tormenting me about living on the poor side of town and wearing crappy clothes. Making this alleged sex selling take place under a bridge on Dixie Highway was just a way to fold their poverty shaming in with their sex shaming.)

So when the school newspaper had a gossip column and the gossip column said, “and which seventh grader was spotted under the Dixie Highway bridge last Friday night?” it was crystal clear to me and my bullies what had just happened — I couldn’t even read the damned school newspaper without being jabbed by my bullies. But it was completely invisible to faculty and parents.

Bullying goes on right under your nose all the time. It’s impossible to stop it.

But I hope you’ll try anyway.

It’s too late for me. But there are children being shredded by the shark teeth right now. Don’t let them grow up to be people who can’t even go to work because the shark bites never healed and run so deep that they bleed all the time, continuing to attract more sharks all the time.

Don’t feed the sharks. Take their food away from them. And don’t blame the victims of shark attacks by telling them they smell like sharkbait.

The Lifehack article says:

“The cause of Avoidant Personality Disorder is still undiscovered, but scientists believe that it may stem from genetics or as a result of childhood environments, such as experiencing emotional neglect from parents or peers.”

So maybe I do have Avoidant Personality Disorder after all. Maybe I’m just incredibly resilient and it took decades of bullying and emotional neglect to create Avoidant Personality Disorder in me whereas most people develop it after only a few years of the same.

It should be a crime. And the whole damned world is guilty.

So why is it me that has to live in the prison they created with their mockery and hatred? Why am I the one being punished for everyone else’s lack of …. well, I was going to say lack of humanity, but since they all behave this way I guess bullying is definitionally an act of humanity. It seems to be me who is not part of the fold.

I don’t have any answers to that.

But from my prison I will continue to send out love letters and lifelines of hope and poetic writing for others to catch hold of like a rope tossed from an extreme place. Sure, the bullies will catch hold of that rope and jerk on it. They always do. They won’t ever stop. But my words will sail over their heads at the same time, floating out to the world where they will offer those with the shark tooth shaped scars on their spirit the healing balm of knowing someone else sees, someone else knows, someone else understands. I know what the sharks can do and I offer you the only thing I have: my words.

And this is what I say to you who are circled by sharks: escape. Find a break in the wall of sharks and swim through as quickly as you can. Don’t look back. Stay one stroke ahead of the sharks and there is good life to be found in the water. Don’t sink. Don’t drown. Keep swimming.

Do not let the sharks decide what you are worth and what you get to do.

Okay, I know that, to some degree, they do and will. The sharks own this world.

But there are stretches of clear blue water on smooth seas filled with playful dolphins and swaying anemones. Find them. Strike out and find your safe waters and own them.

And I’ll keep swimming too.

Early Intervention

April 24, 2017 / unstrangemind

[image description: a honeycomb pattern of clouds in a blue sky, ringed by the green of oak leaves and grass. An image taken outside a McDonald’s restaurant, holding a taleidoscope against the camera lens. A taleidoscope is a type of kaleidoscope that reflects the world down a tube of mirrors instead of displaying a collection of bits of colored glass or plastic that form shifting patterns as they move around in their mirror tunnel.]

This is a re-post of an essay that originally appeared on my old blog on September 3, 2015. It is reproduced here without edits or changes from the original form.

We were discussing early diagnosis/identification and early intervention/therapy over on the Facebook forum for this blog and a reader, Megen Porter, made a deeply insightful comment: “It’s almost like early identification is important so you can intervene on yourself as a parent.”

What a brilliant way to put it, Megen! Thank you!

The standard meaning of the phrase early intervention is to jump in with hours and hours of therapy to try to get an Autistic child to be “indistinguishable from peers” as quickly and as thoroughly as possible. This means extinguishing Autistic behaviors, even absolutely harmless ones that are beneficial to the Autistic person but embarrassing or off-putting to onlookers, the classic example of which is hand flapping.

But Megen put a lovely spin on things by pointing out that it is the parents who need the early intervention. When autism can be recognized and identified early, the parents have a golden opportunity to begin working to understand the child they actually have. They can now learn about autistic neurology and stop interpreting their child through the wrong lens. Their child will be happier, healthier, and feel more love and acceptance for who they truly are once their parents’ fear and confusion has cleared away. Parents can avoid shaming their child for being different and can come to understand that their job is not to try to shape their child like a lump of wet clay but to celebrate who their child is and work from there.

Of course there will be some kinds of specialized education. All children get education at home and at school, and identifying children who are neurodivergent in various ways means that those children can get more targeted education that works with their brain, not against it. Autistic children might need extra mentoring in coping with processing sensory input. All children need to learn how to self-soothe — none are born knowing that. Autistic children often need extra mentoring in that area. Later, it might be extra important that an Autistic child gets academic directions in a written form in addition to or instead of a spoken form. Or an Autistic child might need help with finding a method of communication that works well for that child since speaking isn’t always the optimal choice. These kinds of interventions are very important.

But the most important early intervention — and the earlier the better! — is for the parents. Let’s all work to help parents of newly-identified Autistic children with their early intervention program. What can you do to help?

When someone tells you that their child was just diagnosed, don’t say “I’m sorry.” Say, “that’s great! Now you know what is going on. I’m so glad you have that information.” If you’re a hugger and they’re a hug-liking person, add a hug in there. Be friendly, encouraging, upbeat. If they are telling you this because your child is Autistic, there are other things you can say as well. Talk about the ways that it was helpful to learn about your child’s autism. The newly-aware parent is probably feeling overwhelmed with all kinds of emotions. Emphasize what is good about getting the diagnosis to help that parent get a good start on this new phase of their life. Remind them that their child is still the beautiful, magical, wonderful child he or she has always been. Let them know that the only thing that has changed is that there is more information now, to help them understand their child better.

We should all be as supportive of one another as we possibly can — parents, children, adult Autistics, professionals, everyone. But let’s all try to be extra supportive of the newly-aware parents among us. If you are the parent of Autistic children, don’t white-wash your life but do spend a little extra time talking about the good things. Spend a little extra time talking about great solutions you found that made your child’s life better and, by extension, the whole family happier.

Remind the newly-aware parent that *all* parenting is challenging. This is especially important, because parents whose children are not Autistic cannot say something like that. A parent who does not have an Autistic child is offensive if they remind others that all parenting is challenging because they are not speaking from the same set of experiences, but if you are parenting an Autistic child, please do take the time, when it feels appropriate to you, to remind others that all parenting is challenging because it help to put the struggles of families with Autistic members into perspective. Too often I see *everything* blamed on autism. Other families say “it is hard to transition from one grade of school to the next,” or “that first day of kindergarten is so hard because so many kids get upset when they realize they’ve been left there without mom and dad,” or “the hormonal changes of pre-teen and teen years can be so chaotic!”

Remind that newly-aware parent that they get to say those things, too. Of course it is different with autism because we Autistic people experience and think about the world differently, so we add our own individual flavor to every challenge of growing up and living life. But we are not off in our own world; we live in the same world as the rest of you. We are struggling with the same things everyone is: learning, growing, changing. Our life stories are unique, but just because everything we experience and do is “autism colored” doesn’t mean that everything about our lives that is challenging for those around us is “all the fault of autism.” Gently help that newly-aware parent to realize that blaming autism for everything difficult is the same as saying, “my child’s worldview sucks.” Gently remind them that children are not very good at separating the ideas of “my brain is different and that is a horrible thing” from “I am a horrible thing.”

And, honestly, I think the kids got it right. Any time I try to set my autism on one side and heap all my troubles over there with it and set “me” on the other side and heap all my joys there, I get a massive cognitive dissonance headache. It can take a long time to get there, but help those newly-aware parents learn that autism is not something their child has; it is something their child is. Help them shift their perspective so that they don’t fall into the trap of hating autism and loving their child because that’s a Gordion knot that gets harder to cut through the longer it is being knotted together. If you try to stick a sword into that, you’re inevitably going to cut your child because it is impossible to find the place where autism ends and the child begins. Because that place isn’t there. There is a reason the medical books call autism “pervasive.” It is in every part of a person — there is no part of me that is not Autistic. My brain is an autistic brain and everything I know, see, taste, hear, think, remember, hope, wish, feel, and do comes from that autistic brain. Help the newly-aware parents understand that if they love their child (and you know they do!) they are loving an Autistic child and that’s a good thing.

Early intervention is so crucial for future success. The faster we can get to those newly-aware parents, the more quickly we can soothe their fears, lead them to acceptance, help them to see the joy that they are inheriting from their children every day. Sure, it will be hard — all parenting is. Yes, there are things they can do to increase their child’s chances of success. But they need to be canny and learn as quickly as possible that not every professional has their child’s best interests at heart. They can be choosy and only take those therapies and lessons that help their child to grow strong and healthy. If we can get to those newly-aware parents as quickly as possible, we can save their children a lot of suffering and the parents a lot of grief and guilt. As Megen said, “early identification is so important!” And it is because we have the best chance when we can all help newly-aware parents with the early intervention they need so badly in order to thrive and to help their children thrive.

A is for Autism Acceptance

April 5, 2017 / unstrangemind

This post originally appeared on April 1, 2015. The book that resulted from this Autism Acceptance Month project, The ABCs of Autism Acceptance, is available from Autonomous Press.

Autism Acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses.

[image description: A quote card, white with olive green highlights. It says “Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses…” – Sparrow R. Jones. Beneath the quote is the word ACCEPTANCE in all capital letters, an ornate font, and olive green. The bottom left corner of the image says FB/UnBoxedBrain, indicating the facebook page of the creator of the quote card.]

A is for Acceptance

You may have noticed in the last half-decade or so that there is a growing trend toward speaking of autism acceptance instead of autism awareness. By now, most of you probably know why people are making that choice, but just yesterday I saw a lot of people arguing about the topic, so I think we still need to make it clear.

Autism awareness, in and of itself, is not inherently bad. By now, most people are aware that there is a thing called autism but, in my experience, most people are not very aware of what that autism thing actually is. So I do, at least partially, agree with the people who say we still need more awareness.

What I have a problem with is the form that awareness tends to take.

A week ago, I had to stop listening to the radio because all the stations were already gearing up for April with lots of “awareness” and lots of advertisements about awareness events. I heard a lot about children with autism and nothing at all about Autistic adults. Not only do we “age out” of most services when we turn 18, but we also become invisible. It’s as if the entire world stops caring about us once we are no longer cute children to worry about and, instead, inconvenient adults to be stuck with.

I heard a lot of scare talk, including hearing us repeatedly compared to diabetes, cancer and AIDS. Diabetes, cancer and AIDS kill children. Autism does not. Diabetes, cancer and AIDS are illnesses laid on top of a child’s underlying identity – they can change a child’s philosophy but they do not change innate aspects of their identity. Autism is a cognitive and perceptual difference that is so deeply rooted in our neurology that it cannot be separated from our identity. Beneath cancer, there is a healthy child hoping to break free. Beneath autism, there is more autism – it’s autism all the way to the core. Autistic children do not “go into remission,” they develop coping skills and they mature into Autistic adults, and they work to learn ways to communicate with those around them. There might be suffering that can be alleviated – seizures brought under control, gastrointestinal disorders treated, methods learned and sometimes medications taken for mitigating anxiety. Autistic adults often do not resemble the Autistic children they once were – we grow and develop all our lives – but Autistic adults are still every bit as Autistic as they were when they were children, no matter how many coping skills are learned, no matter how “indistinguishable from their peers” they become.

At the center of the autism awareness movement is an organization known as Autism Speaks that functions like a giant magnet, drawing all donations to them. In the ten years that Autism Speaks has been around, local organizations have watched their funding dry up. Autism Speaks dominates the autism charity scene now and, as a result, they have the power to set the tone when it comes to “awareness.” And that tone is one of despair and misery. We are portrayed as burdens who break up marriages and destroy the lives of those around us. We have been compared to “lepers” (an outdated term for people with Hansen’s disease) and our parents to saints for taking care of us. The awareness that is being put forth is shaped around a rhetoric of fear. Autism Speaks is one of the few organizations that is widely hated by the population it was established to serve. Only one Autistic person was ever accepted in a leadership role and he resigned, saying, “No one says the Cancer Society does not speak for them. No one describes the Cystic Fibrosis Foundation as an evil organization. All that and more is said of Autism Speaks every day. I’ve tried to be a voice of moderation but it hasn’t worked. Too many of the views expressed by the organization are not my own; indeed I hold very different points of view.”

So that is autism awareness. That is what we are rejecting.

What is autism acceptance? Autism acceptance is seeing us as whole, complete human beings worthy of respect. Autism acceptance is recognizing that we are different and helping us learn to work within our individual patterns of strengths and weaknesses to become the best people we can be, not trying to transform us into someone we are not. Autism acceptance is remembering always that Autistic people are listening, including those who might appear not to be, and choosing to speak of autism and Autistic people in ways that presume competence and communicate value.

“Tolerance says, “Well, I have to put up with you.” Awareness says, “I know you have a problem and are working earnestly to fix it.” Acceptance says, “You are amazing because you are you, and not despite your differences, but because of them.”” – Kassiane Sibley

“Acceptance is about recognizing that an autistic person is, and will always be, different but not less – even as some challenges are addressed. ” – Amy Sequenzia

“Autistic people are not viewed as able beings, this view makes us suffer.” – Emma Zurcher-Long

“Autism Acceptance means supporting the Autistic person in learning the things they want to learn and in gaining the skills they need for what they want to do. Autism Acceptance is the radical assertion that at the level of broad, overarching principles, what Autistic people need isn’t that different. We need to be accepted for who we are. We need to hear that we’re OK, we need to hear that the things we have trouble with don’t make us broken or lazy or horrible people. We need people’s actions towards us to reflect that. We need people to listen when we say we need help, and we need people to listen when we say we don’t. We need to be taken as the whole people that we are, and we need to be met with the understanding that we are the experts in our own lives and abilities.” – Alyssa

“Good teaching is based in deep respect for the individual, the cognitive learning style of each student, the shared excitement about the topic of study. Best practice in teaching autistic students isn’t any different, though these faculty would be insulted if I told them so.” – Carolyn Ogburn

“Over the past two years, I have asked Tyler many times how he feels about having autism. And while he clearly understands how the autism negatively affects his social skills and attention, he always tells me that he likes his autism. Although he has also told me, at times, that he wants to be “normal,” he continues to insist that his autism helps him. So if he likes his autism, do I really have the right to counsel him otherwise?” – Kymberly Grosso

“If you have the autism acceptance song in your heart, add Paula and Estée’s voices to your blog rolls, Subscribe to their blogs. Tweet, ‘like’, and show your respect and support to these powerful women. Don’t allow their names to fade into internet oblivion as others try to opt into autism acceptance because it is now the fashion. They were doing it before it was cool. It is easier to say accept autism now because others paid the high cost for daring to say it before us.” – Kerima Çevik

“Acceptance means accepting yourself as you are, even in the face of persistent attempts throughout your life to get you to be what you are not. Especially in the face of persistent attempts throughout your life to get you to be what you are not. The best you can be is Autistic. Let me explain. “The best you can be is Autistic” means that you are at your best when you are being fully who you are, able to express yourself and move through the world in ways that are right for you, comfortable for your body. “The best you can be is Autistic” does not imply impairments, “less than,” “can only do so much.” On the contrary, it means that you are who you are- your pervasive Autistic self (which actually includes those parts that observers might think are “typical” just because they can’t see anything that looks unusual to them), and that encompasses all of who you are, not just the parts that have been “permitted,” and not just the stuff that whatever the DSM of the moment says are your deficits.

“You have the right, or should, to grow in ways that are good for you, that you think are good for you. You have the right to make changes in your life that you think are the correct ones for you.” – Paula C. Durbin-Westby, founder of Autism Acceptance Day/Month/Year/Decade

[image description: a full-color image of the book cover of The ABCs of Autism Acceptance by Sparrow Rose Jones. The cover features a semi-abstract drawing of the alphabet done in rainbow colors and a doodle style of drawing. Copyright 2016, Sparrow Rose Jones and Autonomous Press.]

Autistic Shutdown Alters Brain Function

March 21, 2017 / unstrangemind

[image description: You are standing beneath a mighty live oak (Quercus virginiana) in central Florida, looking up at a heavy, gnarled tree branch dripping in Spanish Moss (Tillandsia usneoides). The sun is just hidden behind the branch and its light shines down through the limbs, illuminating the fluffy yet intricate twists of parasitic angiosperm, creating something of a magical, ethereal effect in the process. Photo copyright Sparrow Rose, 2016]

Content note: descriptions of shutdown, meltdown, self-injurious activity, stress, brain function.

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 a 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 their 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 labeled 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.

Author: unstrangemind (Page 2 of 6)

In Praise of Dr. Paul K. Longmore

Free Darius McCollum

Why Do So Many Autistic People Flap Our Hands?

Friendship, Support, and My Inner Circle

A Close Call with a Whole Gale Storm

The Protective Gift of Meltdowns

How Autism Can Mimic Avoidant Personality Disorder

Early Intervention

A is for Autism Acceptance

Autistic Shutdown Alters Brain Function

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