Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

In Praise of Dr. Paul K. Longmore

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


Dr. Longmore

[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

Darius McCollum

[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?

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

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hands

[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.” 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.

An Open Letter to Jon Stewart concerning #BoycottToSiri

Jon Stewart

[image description: a photo of Jon Stewart on set, head tilted back at an angle and hand to his chin, looking thoughtful.]


Dear Jon Stewart,

I am writing to you because you endorsed Judith Newman’s book, To Siri With Love, calling it, “a beautifully honest and illuminating love letter to Gus, your typical atypical nonneurotypical human.”

I admire your comedic style, Mr. Stewart,  particularly the way your compassion and humanity shine through your humor. When the church shooting happened in Charleston, South Carolina, you joked about not having any jokes and then went on to talk about the “depraved violence” and the “gaping racial wound”. our country faces You spoke of the disparity of response between fearing foreigners would kill us and the all too common situation of “us killing ourselves.”

You lamented the “nuanced language of lack of effort” and predicted that people would shrug and say “what can you do about crazies?” Speaking of racism, you said, “we are steeped in that culture in this country and we refuse to recognize it.”

There is another culture we are steeped in that goes unrecognized. Most people are ignorant of the human rights violations and deaths this culture has directly caused over generations and still causes today. Those who become aware of some of the tragedy are too often able to easily shrug it off as isolated incidents, shrugs of “crazy people do crazy things” and the nuanced language of lack of effort.  The ignorance is so wide-spread that even you, Jon Stewart, who refused to joke after Charleston and wept on camera after the September 11 attacks, were able to blithely pen a little play on words in praise of a book promoting a future human rights violation perpetrated on a young man by his own mother.

You see, while I agree with you that To Siri With Love was honest and illuminating, I would not call it a love letter. Newman now claims she was joking, but in her book she repeatedly writes that she wants to get legal guardianship of Gus when he reaches adulthood so that she can have a vasectomy performed on him.

Mr. Stewart,  we do not live in Dickensian times when a child with no one to care for him or her will be left on the steps of an orphanage to live on gruel until being cast into the streets to take up with con artists and petty thieves. Newman fears that Gus cannot properly take care of a child and the responsibility will fall on her if she is still alive. If she has passed on before Gus procreates, she expresses a free-floating anxiety that the hypothetical grandchild will fall to some unknown fate so terrifying she refuses to even wrap words around it.

In this era of disability benefits and home care services — not to mention the woman who would co-create that new life with Gus as well as her family resources — there is no excuse for violating an adult’s dignity and autonomy by taking away their reproductive freedom. A developmentally disabled child should never be neutered like a pet dog. We are talking about human lives, human rights, and eugenics. If you want to understand how grave a claim Ms. Newman has made in saying she will take over medical guardianship and have a vasectomy performed on her son, read the story of Carrie Elizabeth Bell and the miscarriage of justice that led to her sterilization after Oliver Wendell Holmes, Jr. ‘s response to her rape was to declare that “imbeciles” had no right to have and raise families.

I have written more about this issue in my review of Ms. Newman’s book and I urge you to read my essay when you have finished reading this letter. And then I urge you to further consider the rights of those of us with developmental disabilities.  This country is steeped in a culture that declares us to be objects and possessions, not human beings. This country is so steeped in that culture that it might seem self-evident to you that Ms. Newman would, could, and should choose to take away another adult’s reproductive rights because that adult is her son and her son is Autistic.

Please work to understand our oppression, just as so many white people have worked to understand the gaping racial wound of systemic racism. Please stop endorsing works that promote dismantling the already scanty rights of people with developmental disabilities. Please promote work that seeks to bring us to the table and respects our right to have a say in our lives and futures.

I hope that you will make a public statement against sterilizing developmentally disabled people. Barring that, I at least hope you will make a personal commitment to no longer endorse the work of those who would claim — or even ambiguously joke — that having an adult sterilized against that adult’s will is appropriate. It is not appropriate; it is abhorrent.

And if you will do none of the above, I at least thank you for the time you spent reading my letter and thinking about what I have written.

Thank you for both your comedy and your compassion. I hope that your heart and mind are open to us, Mr. Stewart.  We could surely use as passionate and witty an ally as you.

Your fan,

Max

 

Helping Professionals Need to Understand Circadian Disorders #N24Day

N24 Awareness Day 2017

[image description: a classic black-and-white woodcut image of Alice climbing through the looking glass over the fireplace has been altered so that she is now climbing through an infinitely spiraling clock face. Overlaid on the image are the words: N24 Awareness Day 2017, N24Day.wordpress.com]


November 24th was N24 Awareness Day and in true N24 style, I missed getting this post out on time.

N24, or Non-24-Hour Sleep-Wake Disorder, is a serious, incurable circadian rhythm disorder. Circadian rhythm disorders are neurological conditions in which the body is not synced with the natural 24-hour day like most humans.

Some people might describe themselves as night owls or morning larks, but beyond those relatively small differences, the typical person is mainly awake in the daylight and asleep at night. Some of us, however, have something glitchy in our wiring that makes us not able to keep to the sort of schedule typical people — and thus most of the world — keep.

This is especially important for us Autists because the genetics of autism tend to go hand-in-hand with the genetics of circadian rhythm disorders. No one knows for sure how many of us Autistic people have circadian rhythm disorders, but they are far more common among us than in the general population (although plenty of people with circadian rhythm disorders are not autistic.)

If you’re confused about what N24 is, you can read a good layman description of it here:  What You Need to Know About Non-24 and you can read a Scientific American Mind article about my own struggle with N24 here:  Out of Sync. (Out of Sync was written before I came out as Transgender so the pronouns and name will not match how you know me today.)

What I want to say today is that people in the helping professions — especially those who work with an Autistic population — need to understand N24 because it has a direct impact on the kind of help we need and the kinds of help that will not be useful for us.

N24 has meant that I cannot keep the sort of schedule required to go to school or work a regular job. I had to drop out of graduate school in 2013 because of N24. I went to my state’s Department of Vocational Rehabilitation to get help and was turned away. Because I cannot keep a regular schedule and punch a time clock, the counselors at VocRehab were unable to help me. Their advice was just to get used to living on disability because that was all I could hope for.

That is an unacceptable answer.

Am Autistic leader had another answer for me: get a really good alarm clock. She knew nothing about circadian rhythm disorders and assumed, like so many do, that I am just lazy or undisciplined. To her thinking, if I couldn’t get up for school or work every day I just needed a really loud alarm clock to get me out of bed. That is like telling someone with narcolepsy to just drink some coffee or telling someone with epilepsy to just hold off and have their seizures when they get home.

That was also an unacceptable answer.

I can stay more-or-less entrained by living outdoors. That might mean I could work as a park ranger, but even that would be difficult because I have to sleep outside, too. Right now I migrate with the seasons. I keep myself, as much as possible, in places where the temperature ranges between 40 degrees and 80 degrees Fahrenheit. That way it is safe for me to stay outside for as many hours of the day as possible.  I had to come up with this solution by myself because people who help disabled people are never trained to think of a solution like living outside to get enough light or migrating with the seasons to stay warm/cool enough to live outside.

If I ever manage to become financially successful enough to build my own house, I’d like to live in a specially designed greenhouse — a variation on the Naturhaus — in Colorado where there is a lot of sunshine.  The greenhouse would let sunlight in, to keep me entrained and keep winds and cold out so that I could safely live “outside” year ’round. This is a solution I came upon after years of thought and research. I am very pleased with this solution and hope I am able to achieve it someday.

All the professionals whose job it is to help me with my medical issues or with my government disability benefits either try to talk (or force) me out of my current lifestyle or only grudgingly accept that I have chosen to live in my minivan.  Helping professionals need to learn that circadian rhythm disorders are real conditions, have no cure, and are not brought on by laziness, stubbornness, or willfulness. Likewise, no amount of self-discipline can “train” the N24 out of me. It is a permanent neurological difference that I must learn to accommodate for the rest of my life.

Since leaving graduate school, I have developed a fresh life plan. I am applying to a low-residency MFA program in Colorado. I will have to be present for two weeks in the summer and one weekend each in the fall and spring semesters for the next two years. The rest of my work will be done long-distance, through online study. If I am accepted into the program, I will spend the rest of my year camping in New Mexico (summer) and Arizona (winter), working on my classwork at a table set outside in the sunshine.

I had to devise this life plan all alone and, other than academic financial aid, I will have to fund it by myself. Because I won’t be able to stay in one state all the time, which is a Medicaid requirement, I am getting my passport in preparation for buying affordable insulin in Mexico. I am grateful that I have been clever and resourceful enough to figure out a way to move ahead with my life despite this very real and very limiting disability — my N24 is far, far more disabling than my autism at this point in my life — but I am also displeased that the systems and helping professionals who are supposed to support and assist me as a multiply disabled person have failed me so badly because of lack of understanding of circadian rhythm disorders.

This N24 Awareness Day, our theme is Through the Looking Glass, because being so far out of sync with the rest of society feels like stepping through a looking glass into a confusing Wonderland where normal things become strange and foreign to us. N24 too often makes us strangers in a strange land, understood by no one, often not even ourselves. I would like to invite all helping professionals to peer into the looking glass and strive to understand what life is like on our side of that invisible barrier. You cannot help us until you are aware of our realities and work to understand what circadian rhythm disorders are and what sort of limits they present.

If you have a patient or client with N24 (or any circadian rhythm disorder) please learn more about what they are going through and what sort of assistance is going to be useful for them. Please wait to judge an unusual lifestyle until you have more information about what problems that lifestyle has been constructed to address.

To so many people, I look like a devil-may-care, irresponsible hippie coasting through life by indulging in an alternative lifestyle.  What I actually am is a dedicated and driven individual who has been forced to think outside the box in order to keep reaching for my goals.

While N24 is rare, it is much less rare among people with developmental disabilities, so there is no excuse for not learning more about it. Helping professionals need to understand circadian rhythm disorders.

Thank you and happy (belated) N24 Awareness Day.

Dr. Simon Baron-Cohen Does Not Understand the Neurodiversity Paradigm

[image description: an abstract statue, “Winning”, in front of the Civic Center in Beaumont, Texas. It may be intended to portray the scuffle at the basket in a basketball game. Grey pipes and knobs intertwine to hint at a jumble of bodies with one person raised above the cluster, arms upstretched to the clear, blue sky. Photograph copyright 2018, Maxfield Sparrow.]

The Journal of Child Psychology and Psychiatry published an editorial perspective by Dr. Simon Baron-Cohen in their June issue that is only now beginning to get some media coverage. In his essay, titled “Neurodiversity – a revolutionary concept for autism and psychiatry,” Dr. Baron-Cohen makes a solid case through most of the piece for viewing autism through the lens of the Neurodiversity Paradigm.

 

From beginning to end, the piece is filled with what would otherwise be marvelous messages from one of the most prominent autism researchers in the world. Dr. Baron-Cohen speaks from a huge platform, so it is greatly heartening to read positive statements from the abstract — “Evidence at the genetic, neural, behavioural and cognitive levels reveals people with autism show both differences, and signs of disability, but not disorder. Disability requires societal support, acceptance of difference and diversity, and societal “reasonable adjustment”, whilst disorder is usually taken to require cure or treatment.” —  to the conclusion — “genetic or other kinds of biological variation are intrinsic to the person’s identity, their sense of self and personhood, which seen through a human rights lens, should be given equal respect alongside any other form of diversity, such as gender.”

 

If the entire essay actually promoted the Neurodiversity Paradigm, it would truly be cause to rejoice. Having Dr. Simon Baron-Cohen on board would represent the biggest boost the Neurodiversity Movement has ever seen. Sadly, there are two major stains on Dr. Baron-Cohen’s editorial. The first is his use of person-first language throughout the essay. How can Dr. Baron-Cohen claim to believe that autism is “intrinsic to [a] person’s identity” yet not even give a nod to identity-first language?

 

The importance of Dr. Baron-Cohen’s choice of terminology pales, however, in light of his choice to fold the idea that only some Autistics are not disordered, while others are, indeed, disordered (thus, one would assume, Dr. Baron-Cohen views those Autistics as “requir[ing] cure or treatment”.)  Dr. Baron-Cohen wrote, “‘Disorder’ should be used when there is nothing positive about the condition, or when despite trying different environmental modifications, the person is still unable to function. […] Using these definitions, we should remain open-minded that some forms of autism are properly thought of a disorder, and others not, given the heterogeneity that exists within this diagnostic category.”

 

Dr. Baron-Cohen has declared that some Autistics have nothing positive about their neurology.  And what of the second half of his definition of disorder? Those Autistics who are “unable to function” are disordered while, logically, those who are “able to function” are not disordered. But what does “function” mean? Dr. Baron-Cohen has gone one step beyond the “high functioning/low functioning” paradigm that the Neurodiversity Movement so strenuously speaks against and straight into functioning/not-functioning as his dividing line between who is permitted the human dignity of “identity, […] sense of self and personhood” and who must be “cured” of their “disorder.”

 

Not only is this attitude not at all in line with the Neurodiversity Paradigm, it is terrifying. Who gets to decide what “functioning” means? Who gets to draw that line between person and not-person? Are my friends who cannot drive (not all of whom, I should note, are Autistic) still “functioning”? What about those (also not only Autistics) who can’t manage money? Those who can’t work a job (you guessed it: also not only Autistic friends) and live on disability payments? Those who are unable to speak (yes, even these friends are not all Autistic) with their voice? Obviously, my answer is that all Autistics have personhood and “function” just fine.

 

Dr. Simon Baron-Cohen has inserted a chillingly genocidal twist into his version of “Neurodiversity” that is so overwhelmingly negative it erases any warm feeling I might have had about the marvelous things he says in the rest of his essay. I am left with the feeling that Dr. Baron-Cohen does not actually understand the Neurodiversity Paradigm and is merely repeating buzz phrases in, at best, an attempt to remain relevant and, at worst, an attempt to sabotage the Neurodiversity Movement.

 

The Neurodiversity Paradigm says that all brains are good brains and no one is disordered or in need of a cure or treatments that work to the detriment of their personhood. Dr. Baron-Cohen needs to study Neurodiversity further and either sign on to it as-is or realize that his work is incompatible with the Neurodiversity Paradigm and stop trying to re-make it in his own image. The Neurodiversity Paradigm declares everyone worthy and valid, not merely those upon whom some official seal of medical approval has been bestowed.

Friendship, Support, and My Inner Circle

crosswalk

[image description: a transmasculine person smiles in front of the rainbow crosswalk painted for Pride Week in Houston’s Montrose neighborhood. Image © 2017, Max Sparrow]

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 in to 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 great risk in being a closed person.  If I let no one in, I impoverish myself.  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.

I have other levels of friendship. The next level is 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” (athough, 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 have 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

metal tables

[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

turtle

[image description: a tortoise 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 turtle 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, Sparrow Rose.]


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

Rose

[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.  This 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 hopes that it will help others feel less alone or maybe give someone new things to think about and new avenues to explore.  Even if I’m simply venting my own frustrations to the void, that’s helpful for me. So I’ll continue.

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.

 

 

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