Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Journaling to Cope with Trauma and Anxiety

Content note: trauma, illness, global climate change, anxiety, quarantine

Cover of Your Healing is Killing Me by Virginia Griese. A drawing of a woman with brown skin and black hair in an undercut, wearing a blue tank top and blue patterned leggings. Her hands and feet are taped and she is leaning into a left roundhouse punch. The skyline of a city is visible on the distant horizon.

On page 37 of Your Healing is Killing Me, Virginia Grise lists ten characteristics of PTSD. Number six is, “A sense that time is short and there is no future.”

I became very sick on February 15th, 2020. It took me a month to recover and my lung capacity is still, 39 days later, 5% below my pre-illness SATs. The first week was brutal and I nearly went to the emergency room the 8th night of illness. (In retrospect, I probably should have. I have a stubborn resistance to handing my body over to the care of professionals.) That illness triggered past medical traumas and I experienced a full-blown manifestation of Grise’s characteristic six.

A sense that time is short and there is no future.

I had a regular therapy appointment two days after that crisis night of chest pain. I came in exhausted, weak, still reeling and smelling of the fear of death. The morning of therapy was the first day I could stand up long enough to shower. I spent the entire session, to paraphrase my therapist a week later, airing an expanding spiral of grievances that began with being sick and ended with the destruction of the planet. I remember ending the session by telling her I felt the predictions of the end of Earth’s habitability were too generous by two decades.

A sense that time is short and there is no future.

When Italy quarantined the entire peninsula, I knew we were watching our future. I was still so triggered by my own illness and vulnerability that I got swept into extreme anxiety. I was surely unpleasant to be around, especially since most people around me at that point were still thinking of it as a problem over there, not a problem fast on its way here. When the numbers began mounting our roles flipped: people around me became more and more anxious, while the moment my city announced social distancing and closed bars and restaurants my anxiety tumbled off my shoulders and I felt a deep sense of calm for the first time in weeks.

The more things tighten down here and the more cities and counties all over the U.S. and our neighbors on this continent close everything down and go into quarantine, the less anxious I feel. I was watching a train barreling down on us and feeling helpless and exposed. Now life is very different and much harder for many people, but I feel relieved that people here are finally taking the novel coronavirus seriously and taking action.

The reason I got caught on characteristic number six when I was re-reading Griece this morning is that I believe so many people with residual trauma (which is probably the majority of all humans) are responding to current events through lenses created by their personal traumas. Like me. And I just wanted to remind us all that this is not the way life will be forever. Right now many of us are struggling with a sense that time is short and there is no future. But this moment is not our forever. There is more future to come. Life will not always be this way.

The pandemic is teaching us things about ourselves as people and as a nation that we needed to know. So much denial. The intensity of our thoughts and experiences is cutting through things we used to think or things we never paused to think about at all. We will come out the other side changed. May that be a change for the better.

May we become a more compassionate people. May we pay closer attention to the ways we are connected. May we no longer take so many everyday miracles for granted. May we gain confidence in our ability to take collective action for greater good. When these times in which we are living become history, may we apply our new strengths and increased wisdom to tackling other problems that seem too big. May this time of separation be the seed for a future flowering of community, connection, and courage.

Time is short, true. (though it seems longer during quarantine, yes). But there is a future. Not only is there life beyond the pandemic, but we also have the chance to shape a future we barely dared to dream before we went through this social winter in early spring.

I am taking this trauma-triggering time and leaning into it. (note: I feel safe and supported right now. Be mindful of your own choices, depending on what your current life situation is.) Every feeling I have about quarantine is a chance to follow that hint back to earlier feelings I have squashed down and out of sight for years — in some cases for decades — but I need to finally allow myself to feel those feelings so they will stop haunting me. I am using the time I used to spend driving to class, to therapy, to jam sessions, to social time to deepen my practices, including journaling. A friend in a Zoom meeting said he was afraid to journal during an anxiety spiral because he was afraid he would just write an anxiety spiral. I said he knows himself best, but to consider allowing himself to write his anxiety out and see where it leads.

When I am feeling particularly anxious, my journal is a crucial tool for holding myself together. During those times I often carry my journal with me everywhere I go. When the spiral starts, I open to the next page and just start writing it all down instead of thinking it. Often my writing is so frenetic I couldn’t read it if I wanted to, but that’s not what matters. Almost never do I go back and read stress journaling. I leave it on the page. Better there than banging around in my head. When I hit the page in distress I just keep writing until I feel better. Often it hits in the middle of a sentence. “I’m done.” I don’t even finish the sentence. I just stop and close the book and go back to whatever I was doing when the anxiety hit.

I have learned that the page is the safest place to bring my mind. Even therapy is not completely safe. There are things you can’t say in therapy unless you are ready to be locked up for a while. I can give everything to the page. If I’m worried about someone else reading it, I can even burn it or shred it after I write it, making great ceremony of releasing my anxiety through destroying the pages of weighty thoughts that might unjustly incriminate me if the wrong person saw what I really feel and think about.

Okay, I’m not the monster that last paragraph makes me out to be. Neither are you. But we all have some territory on our interior maps filled with fear of the consequences if others knew what really goes on inside our heads. Even those people who seem fearless from the outside have just learned how to live with that territory. If you have wanted to journal but find yourself holding back or facing writing block when you meet the page, try a week of journaling with the intention of ritually destroying your writing afterward and see if that frees you from the internal censor fighting against you with its outdated methods, originally developed to protect you.

Because these times call for self-honesty. It’s scary to allow ourselves to see ourselves from the inside. But befriending yourself with honesty and acceptance will go a long way toward holding yourself together while we’re all holding ourselves apart.

N24 Awareness Day 2018 – Autistic and Living With N24

It’s that time of year again: November 24th is N24 Day. If you read my blog for autism information, you’ll want to keep reading because N24 is roughly three times as prevalent among Autistic people as in the general population. And if you read my blog to get to know me better you’ll definitely want to keep reading because N24 is my most challenging disability (and I am deeply and pervasively challenged by living Autistic in a world not build with our needs in mine.)

N24 is short for Non-24-Hour Sleep-Wake Syndrome which has many other names including free-running sleep disorder and hypernychthemeral syndrome (I will happily pronounce that last one for you if we ever meet in person and you remember to ask me.) N24 is a circadian rhythm disorder (CRD) and it has “sleep-wake” in the name, but it’s about so much more than sleep. Sleep is the most obvious marker of the disorder so that’s what it gets identified by and what it’s named after, but it affects the body on deep, systemic levels.

Here’s the nutshell scientific description. I’m keeping it as short and sweet as I know how to:

In the center of your brain, there is a region just above the optic chiasm (the place your optic nerves run through on their way to the visual cortex at the back of your brain.) That brain region is named by its location rather than its function: the suprachiasmatic nucleus. The short name is the SCN.

Your retina is the “movie input” for the imaginary visual theater in your brain. Light comes into your eyes and the rods and cones on your retina translate that analog information into electrical impulses that pass through neurons on their way to the visual cortex where they’re interpreted (and the image, which becomes flipped on the way there, is corrected again so things that are right side up look right side up to our perception.) Many of you reading this were privileged enough to learn this information in high school (or even elementary school for some) but others may never have learned about rods and cones and how our nervous system works to allow us to see. So I apologize if I’m going over well-worn territory and you’re bored. I’m trying to get everyone on the same page.

So there’s another type of sensor on your retina that you probably never learned about unless you studied university-level biology. I’m not even going to bother with the long name because I’d have to look it up and it’s not that important to this story. So we’ll just stick with their nickname: ipRGC cells. (I might even have the capitalization wrong on that, but I’m stubbornly not going to look it up.)

The ipRGC cells are pretty special and there are some amazing experiments that have been done that show that many people who are 100% blind and can’t even see light and dark still have intact ipRGC cells that are doing the job they evolved to do. These neurons have super long axons that go all the way from the retina to the SCN in the center of the brain. And we’ve found one specific function of the ipRGC cells (though they probably do lots of other things I’m not aware of, like most body parts) which is that they recognize light (the ipRGC cells are found in their densest clusters on the parts of the retina that are most exposed to the sun when we are walking around outside) and tell the SCN about it.

That’s it. Even if our rods and cones are damaged or absent, so long as we have ipRGC cells we can “see” light and the SCN knows when day and night are happening and does its work accordingly.

Now you might ask me, why is it so important whether my SCN knows if it’s day or night? I’m glad you asked (even if it was a pretend ask that I just typed myself. You probably actually don’t care. Or I guess you marginally care or you wouldn’t still be reading.)

Every cell in your body has a clock in it. Even your blood cells have internal timekeeping mechanisms that have been shown to continue to respond to day and night in a laboratory after being removed from your body to be studied. Cells are tiny, though, and there’s not a lot of room in there for complicated “machinery.” The clocks in your cells are only as accurate as they need to be. They’re like those wall clocks that are designed to periodically talk to the “atomic clock” the Navy keeps. A radio signal broadcasts the most accurate time we have and your wall clock tunes in to that feed and nudges its own display regularly to reflect accurate time. The clock only needs to be vaguely accurate and check in with the radio signal often to make it a highly accurate clock.

Your body’s cells are the same way. They have clocks in them but they’re so-so. They’ve evolved to check in regularly with the SCN, which knows what time it is, to keep your body synchronized.


While bodies are always working to maintain homeostasis (a balancing act that requires different glands and organs to secrete precise amounts of hormones and other biochemicals.)the human body is not static. One example of homeostasis in action is when you eat a piece of chocolate cake and, if your pancreas is functioning properly, your body secretes insulin to escort all that sugar into your cells where it can be converted to the fuel your body runs on.

One example of the body not being static is that you have a different amount of cortisol when you wake up compared to when you go to bed. (Cortisol is usually referred to as a “stress hormone” but that can be a little deceptive because you’ll be way stressed out (and chronically ill) if your body doesn’t make enough cortisol (any cortisol at all.) That’s called Addison’s Disease.)  Someone without a CRD will usually have the most cortisol upon awakening (to rouse you and stir you from sleep) and, unless they’re under a chronic, unhealthy level of stress, cortisol will usually reduce through the day.

So your body is always changing what it’s doing and cycling through different hormonal routines. All of this is precisely timed and regulated by responses to stimuli — in other words, your body reacts when things happen to it. Some of those things are obvious: like eating the piece of chocolate cake. Some of those things are almost TOO obvious: they are things that are so much a part of your environment you might never actually think about them. One of the biggest stimuli — one that has ruled life on this planet for as long as there’s been life on this planet — is the light of the sun.

One way to measure light is lux. Lux is a measurement that combines brightness and distance. I spent thousands of dollars on therapy lights and still was only able to produce a tiny fraction of the lux our eyes receive when we’re sitting in the shade of a tree on an overcast day. The sun is bright and in the sky all day and not only does it let us see what’s around us, but it also regulates what our bodies do. Some mammals are mostly awake at night and sleep during the day. Others (like mice) are crepuscular. That means they are most active at dawn and twilight and chill during the darkest dark and the brightest light.

Humans evolved to be mostly diurnal – awake at day and asleep at night.  Yes, it’s not that simple. In the winter when nights are very long, humans who do not live with electricity (and thus no artificial lights to affect their SCN) tend to go to sleep earlier (because it gets dark earlier and dark triggers sleepiness in ways I will probably explain before I’m done writing this) and then wake up for a few hours in the middle of the night before going back to sleep for the second half of the night. If you do that and you live with electricity you are probably not experiencing that natural mid-sleep awakening. You are probably being disrupted by artificial lights, especially if you wake in the middle of the night year-round and not just in the darkest part of the winter.

Also, even without artificial lights, some people have an easier time in the morning (larks) and some have an easier time in the evening (owls) while the vast majority of people living without electricity will naturally wake at about the same time, early dawn. We have so many more night owls now than humans did historically because we live with artificial lights that have disrupted our circadian rhythms and the way our bodies’ timing system works, adding artificial light will make people into night owls, not into larks. Light keeps us awake because the ipRGC cells (which have tuned into blue and part of the green section of the light spectrum because the sky is blue and the sun is green (I know it looks yellow. That’s the effect of the atmosphere. I took a terrific astrophysics class from Dr. Ronen Plesser and one thing I love about how he teaches is that rather than tell you something cool about astronomy he has you do problem sets and teach yourself the cool stuff by discovering it through the calculations. I did the math and the sun is most definitely green.)

When we see blue/green light (which is mixed in with all the other colors in those white light bulbs we light up the night with) the SCN tells the brain to mop up the melatonin. Melatonin is a hormone that, among other things, helps you feel sleepy. That’s why dark makes you sleepy. It’s not the dark per se. It’s the absence of light from the blue-green spectrum. Using a purely red or amber light should allow your body to become sleepy as well if you are producing melatonin and no blue/green light is leaking into your red or amber light. That’s why a campfire won’t typically keep you up all night: not enough blue/green light in it to wipe out your melatonin.

But the SCN does more than just help you wake up and go to sleep. Remember all those cellular clocks that don’t keep perfect time? Without the “atomic clock” they will drift farther and farther away from the actual time? Your SCN is that atomic clock. Every cell in your body talks to the SCN. It’s a busy place. And when your SCN is confused, your entire body gets confused. It’s why studies show shift workers getting fatter and sicker on their work schedule – their SCN is struggling to keep up and their body literally doesn’t know what time it is. Hormones like ghrelin and leptin get out of whack. The stomach is not prepared to digest at mealtime. The pancreas doesn’t know which way is up and loses grip with its cycles and reactions.

Now back to what N24 is. Most people who have N24 are completely blind. They have N24 because they don’t have retinas. One example is an acquaintance, Eric, who had an infection that required his eyes to be removed. Now he has N24. I am not blind and I do appear to have functioning ipRGC cells, but detective work insinuates that the root of my N24 is my SCN, probably not my ipRGC cells. I say that because when I sleep outside and wake up with the sun and don’t go indoors until noon, my SCN starts functioning the way it is supposed to. When I live indoors I just can’t get enough light into my eyes for my brain to work the way it’s supposed to.

A freelance journalist wrote an article about me and my choice to live in my car in order to get the amount of sun I need in order to function: http://www.sparrowrose.com/2015_SeptOct_SciAmMind_circadian.pdf

So…. what happens to my body when I live indoors with the lower level of daytime light and much higher level of artificial evening light? The first thing that happens is I start to have “insomnia” and “excessive daytime sleepiness”. But that’s not actually what’s happening.

Think of your circadian rhythm like a conveyor belt. Your body is on a sort of long treadmill, moving through the cycles of the day. When you are in sync with the 24-hour day you probably wake up in the morning, get ready, go to work or school, hit a late afternoon slump, get a second wind and do fun things with family or friends in the evening, then go to bed and do it all over again the next day. You might stay up a little too late sometimes and maybe you always grumble when the alarm clock goes off. You might even be tired all the time because you keep staying up a little too late and stretching yourself a little too thin.

But you keep getting up and going to work every day because your circadian rhythm is like a thick rubber band. You can stretch it by staying up too late or setting the alarm earlier than your body wants to get up, but the stretchy band keeps snapping back into place. Maybe you don’t have any patience for people who are late or miss things because you know how hard it is to stay in a routine but, goshdarnit, you put in the effort and deal with the suffering and get it done so anyone else who doesn’t do that must be weak and undisciplined, right?

Except some of us have broken brains that have turned our stretchy rubber band into something stiff and rigid, fragile, easily broken and hard to restore.  There are two aspects to a CRD: your sleep is not happening at the time you want it to happen (and/or happening at times you don’t want it to) AND there is a rigidity that it’s futile to fight. I’ve fought (and lost) that battle and after a few times of getting so sleep deprived I was hallucinating and a few times of nearly accidentally killing myself by falling asleep while driving I’ve learned to respect the rigidity and respect that the Sleep Monster is stronger than I am.

So my “conveyor belt” is broken. In me, that looks like I still have a conveyor belt but instead of being 24 hours long it’s something like 26 hours long. When I don’t live outside, I come unmoored from the 24-hour day. I start to slip around the clock because my conveyor belt is set to the wrong speed. And my body’s cells get confused and start desynchronizing — for example, my immune system might think it’s 7 am while my stomach thinks its noon and my pancreas thinks it’s 3 am. When I am living outdoors and synchronized, I take 10 units of insulin per day. When I am living indoors and desynchronized I take over 30 units of insulin per day and still have what’s called “brittle diabetes” which means I’m always dangerously high or dangerously low and on a roller-coaster between the two with no real control. It’s miserable and deadly.

I get depressed and angry when I’m desynchronized, mostly because I feel so awful on such a deep, systemic level that I can’t even identify “what hurts”. Basically, everything is shit when I’m desynchronized. It takes days to recover from, as well.  And the worst part is that my entire connection to humanity falls apart. I can’t even make it to a doctor’s appointment when I’m desynchronized, let alone get to work or class. I learned I can’t even maintain a synchronous (like real-time chatting) online friendship because I can’t be awake consistently during the times my friends are awake. If I meet night people while I’m awake at night, I will continue to shift around the clock and not be able to see them for weeks. By the time I “come back around the clock” they have decided I abandoned them and moved on to other people.

So there’s my annual contribution to N24 Awareness Day – a rambling, stream-of-consciousness discussion about what I live with. There is no cure for N24. Evidence points to it being a genetic condition. I am forced to live in specific ways and with specific routines or the entire world falls apart and I can’t function. My circadian system is almost unbelievably delicate and it doesn’t take much to upset it. I can’t live with people. I can’t sleep with a lover. When I go to multi-day conferences I have to miss out on so much because I can’t spend three days in a dark hotel conference room watching powerpoint slides and my evenings in brightly lit hotel bars and dining halls. I have some laser goggles that filter out all the blue and green light but I hardly use them anymore. I had an evening class with a professor who thought it was really funny to use the red markers on the whiteboard and laugh about how I couldn’t see what he was writing (I could have easily seen blue or green markers as they would have looked black through my goggles.)

Being Autistic can be tremendously isolating and I do experience that. But my N24 makes me far lonelier and feel far more isolated. I can find people who appreciate Autistic people. I’ve never yet found anyone who appreciates N24, let alone anyone able and willing to bend their life the little bit I would need someone to bend to meet me.

Many of us Autistics complain that we go 95% of the way and meet neurotypicals unwilling to go that 5% because they insist that we should meet them half-way…not realizing how far we’ve already bent to get on that bridge between our neurologies.

With N24 I feel like I’ve gone 250% of the way and no one sees that because it’s still not enough for me to mesh with “normal society” (and I haven’t yet found an “abnormal society” that could be a social home for someone with N24.)  Even dating someone else with N24 was a challenge because we were dealing with TWO people’s sets of restrictions and then when one or both of us lost entrainment and became desynchronized we’d often be on different cycles, chasing one another around the clock like a dog chasing his tail and never catching it.

Being Autistic can be lonely, but I have a huge “Neurotribe” and many dear friends within that group. Having N24 is what it’s like to be a “tribe of one” — isolated, alone, misunderstood, and struggling to survive in every sense of the word.

And now, if you have read this far, you are so much more aware of N24 and the devastating effects it has on a person’s life. Thank you for listening.



Mercy(less) Killings – A List Poem

I’m working on a poetry manuscript and I wanted to share one of my poems with you. This is a poetic form called the List Poem and the form has a respectable history, having been used by ancient Greek poets, Biblical scripture, Walt Whitman, and Alan Ginsberg, among many others.

Content note: murdered Autistics, murdered children.

Mercy(less) Killings: A List Poem
Maxfield Sparrow

“A person with a disability is killed by their parent or other caregiver approximately every week.”1

At least 72 disabled people were killed by their parents or caregivers in the year 20132
These were the Autistics slain:

  1. Brandon White3 – smothered with a pillow by his mother’s boyfriend, age 15 years.
  2. Tia Jones4 – slow death from neglect and multiple untreated infections, age 12 years.
  3. Jessie Dziomba5 – days of severe diarrhea with no medical attention, age 19 years.
  4. Isabella Wiens6 – removed from a non-abusive mother with a learning disability then abused to death in foster care, age 21 months.
  5. Girl Child Seo7 – strangled by her mother, age 4 years.
  6. Alex Spourdalakis8 – stabbed in the heart by his mother, age 14 years.
  7. Robert Guinyard, Jr.9 – beaten to death with a metal rod by his father, age 4 years.
  8. Terry “JuJu” Smith, Jr.10 – killed by his step-brother and buried in the family’s backyard, age 11 years.
  9. Matthew Hafer11 – given an intentional prescription drug overdose by his mother, age 28 years.
  10. Jake Harkins12 – shot by his father, age 10 years.
  11. Jaelen Edge13 – poisoned and drowned by his mother, age 13 years.
  12. Tamiyah Audain14 – starved and had infections neglected by her aunt, age 12 years.
  13. Antonio Brooks15 – his father neglected medical care while Antonio slowly died from a ruptured stomach, age 14 years.
  14. Damiean “Luke” Gulley16 – strangled by his step-father who hid his body in a ravine, age 14 years.
  15. Randle Barrow17 – drowned by his mother, age 8 years.
  16. David Herrerra, Jr.18 – burned alive by his sister for the insurance money, age 22 years.




  1. Perry, David. “Ruderman White Paper: Media Coverage of the Murder of People with Disabilities by Their Caregivers.” Issuu, Ruderman Family Foundation, Mar. 2017, issuu.com/rudermanfoundation/docs/murders_by_caregivers_wp_final_fina. Page 6.
  2. “2013 Deaths.” Disability Day of Mourning, disability-memorial.org/2013-deaths.
  3. Hutchins, Ethan. “Man Sentenced to 90 Years for Denison Teen’s Murder.” Texoma News, Weather, Sports | KXII News 12, www.kxii.com/home/headlines/911-call-helps-convict-Robert-Gray-Jr-of-murder-265783951.html.
  4. Shaffer, Cory. “Ohio Supreme Court Will Decide If 10-Year Prison Sentence Too Long for Parents Convicted of Letting Sick Child Die.” Cleveland.com, Cleveland.com, 12 Sept. 2018, www.cleveland.com/court-justice/index.ssf/2018/09/ohio_supreme_court_will_decide_1.html.
  5. Michel, Lou. “How Did Jessie Die?” The Buffalo News, The Buffalo News, 27 July 2013, buffalonews.com/2013/07/27/how-did-jessie-die/.
  6. Kane, Laura. “B.C. Mother Sues Province after Infant Daughter Dies in Foster Care.” CTVNews, 25 Mar. 2015, www.ctvnews.ca/canada/b-c-mother-sues-province-after-infant-daughter-dies-in-foster-care-1.2297457#.
  7. “Korean Mother Kills Her Autistic Child, Gets 3 Years in Prison.” Korean Mother Kills Her Autistic Child, Gets 3 Years in Prison – KoreaBANG, www.koreabang.com//2013/stories/korean-mother-kills-her-autistic-child-gets-3-years-in-prison.html.
  8. WFLD. “Suburban Mom Admits to Stabbing Autistic Son to Death.” WFLD, www.fox32chicago.com/news/crime/suburban-mom-admits-to-stabbing-autistic-son-to-death.
  9. Jamie. “Exclusive – Robert Guinyard’s Life and Death in SC’s Child Welfare System.” Thestate, The State, www.thestate.com/news/politics-government/politics-columns-blogs/the-buzz/article13876415.html.
  10. “Terry Smith Jr. – The Strange, Sad Story of a Murdered 11 Year Old Boy in Menifee, California.” Sott.net, www.sott.net/article/263989-Terry-Smith-Jr-The-strange-sad-story-of-a-murdered-11-year-old-boy-in-Menifee-California.
  11. Cullen, Natalie. “Woman Arrested For Murder in Son’s Death.” LASVEGASNOW, LASVEGASNOW, 31 July 2013, www.lasvegasnow.com/news/woman-arrested-for-murder-in-sons-death/72405028.
  12. “Memorial Dedicated at NE Phila. School to Autistic Boy Who Died.” CBS Philly, CBS Philly, 2 Apr. 2014, philadelphia.cbslocal.com/2014/04/02/memorial-dedicated-at-ne-phila-school-to-autistic-boy-who-died/.
  13. KABC. “Mother Sentenced to Life in Prison for Murder of 2 Kids in Santa Ana.” ABC7 Los Angeles, 9 Jan. 2016, abc7.com/news/mother-sentenced-to-life-in-prison-for-murder-of-2-kids-in-santa-ana/1152156/.
  14. CBS. “Report: Questions Arise For Child Welfare Workers After Death Of 12-Year-Old.” CBS Miami, CBS Miami, 27 Sept. 2013, miami.cbslocal.com/2013/09/27/report-questions-arise-for-child-welfare-workers-after-death-of-12-year-old/.
  15. Speed, Ashley K. “Hampton Man Pleads in Autistic Son’s Death.” Dailypress.com, 25 Aug. 2015, www.dailypress.com/news/crime/dp-nws-plea-manslaughter-20150826-story.html.
  16. Peres, Jessica, and Corin Hoggard. “Stepfather Arrested for the Murder of Damiean Gulley.” ABC30 Fresno, abc30.com/archive/9341176/.
  17. “Police Say Autistic Child Was Murdered by His Mother.” Quadcitiesdaily.com, 16 Dec. 2013, quadcitiesdaily.com/?p=140932&utm_source=rss&utm_medium=rss&utm_campaign=police-say-autistic-child-was-murdered-by-his-mother.
  18. Malik, Alia. “Police: Woman Set Fire That Killed Her Brother.” San Antonio Express-News, Express-News, 22 May 2014, www.mysanantonio.com/news/local/article/Police-Woman-set-fire-that-killed-her-brother-5495449.php#photo-5620559.

But What About the Good ABA Therapists?

ABA Bear

Image description: A hand-drawn bear of many textures is riding a tricycle. Above him are the letters ABA and below the letters, it says Abolish Bear Abuse. Below the bear, it says A bear will do ridiculously unnatural things for a handful of gummy humans … but that does not give you the right to make him do it. Available on t-shirts, stickers, tote bags, and more. Copyright Maxfield Sparrow

This week I ended up in yet another conversation with someone who wanted to defend ABA. He repeatedly asked us not to demonize ABA and kept dismissing discussions of the origins of ABA by saying that Lovaas is a long time ago and we can’t compare ABA to where it came from. Along the way, he used a racist analogy that I won’t repeat here.

He kept insisting that there are abusive ABA practitioners and good ABA practitioners so we shouldn’t vilify the entire body of ABA based on those bad apples. After several rounds of that, I wrote this and decided to polish it and share it here in my blog as well. Thanks for reading!

My problem is bigger than ABA. I have a strong issue with the entire field of behaviorism from which it springs. (I know, I know. You have some analogy about how I shouldn’t judge roses unfairly because they grew from manure. Now we can skip past all these analogies. You’ve been heard there.)

Before behaviorism, psychology was concerned with mind. Psyche. It’s hard to translate from the Greek, but you usually get soul, mind, or spirit. The whole field of psychology was concerned with interiority.

Along came Skinner with his boxes and his pigeons and his scientific revolution. You can’t question a pigeon about her interior existence or enact the talking cure on her. All you can observe is her behavior. And so behaviorism was born, by studying animals and later transferring the methodology to humans.

Skinner didn’t originally want behaviorism to be applied to humans. Read Steve Silberman’s excellent history in the book Neurotribes for more details about Skinner’s concern and eventual yielding to those who wanted the theories of behaviorism to enter the field of human psychology.

This is why so much ABA looks like animal training: that’s where it came from. Watch anyone training a bear to do tricks and you will recognize the methods. (Any readers who have been traumatized by therapies should not watch videos of bear training. It gave me nightmares for weeks.)

ABA has a fundamental flaw because Behaviorism has a fundamental flaw. It’s a psychology cul-de-sac that people cling on to because they don’t know how to access the interiority of those who do not speak so they don’t know how to do any psychology other than animal training when faced with non-speaking clients.

And since Behaviorism rapidly became the gold standard for addressing autism, the toxic viewpoint and theories blanket nearly all autism projects, programs, theories, therapies, and classes. Most insurance will only pay for something named ABA, so everyone jumps into that name because it’s the only game in town. And the organizations certifying people as officially qualified to perform ABA are perpetuating everything that’s wrong with Behaviorism while veiling it in soothing words – often, ironically, Behaviorists use wording lifted from the Neurodiversity Movement but stripped of their intended meaning and context. It’s insidious and it’s awful.

And some good people slip through. Some people give lip service to behaviorism, knowing in their heart it’s the wrong approach, get their certification, and then get out into the world and practice with genuine compassion and help people.

And a lot of those people don’t have the resources to set up their own practice, so they go to work for someone else and are forced to do things they feel very wrong about if they want to keep that job. Those who don’t have the resources to quit and go work someplace else end up with PTSD over time because of what they are economically forced to perpetrate. I feel for them. I’ve met some after they quit and recovered somewhat. It’s a very real trauma they’ve experienced – the trauma of causing trauma in others. It’s lucky that in some places, people can get help financially for traumatic experiences, such as at Curo Financial for example. It’s a hard thing to deal with otherwise.

I never did make that flaw in Behaviorism clear, did I? That flaw is the Black Box. Behaviorism is external. Behavior. What you observe.

You say ABA cares about internal things? Motives? Preferences? Aversions?

True, but it’s designed to be able to glean all that from observing behavior, not from social-emotional bonding between client and professional.

You can talk all day long about practitioners who do care about their clients, who do bond with them socially and emotionally, who do care about interiority, etc. You and I both know that they exist. I have met some BCBAs that I really liked, who were genuinely good people.

But … in order to present ABA as something beneficial for ALL Autistics, it has to be something that can be done with non-speaking Autistics and show documentable results.

That’s the number one argument I hear from those who support ABA: “it works. It’s documented.”

I’m not denying that. ABA works for all the same reasons that bear training works. My argument against Behaviorism is that I don’t want my people viewed as or treated like animals. We are human beings. It harms us to be viewed as or treated like animals and that is what Behaviorism encourages from its practitioners.

Behaviorism, at its core, only cares about the exterior reality of a person. And until professionals start learning how to access interiority with non-speaking Autistics (it can be done. I know parents who do it every day with their non-speaking children) Behaviorism and ABA will always be the order of the day because ABA is easy and documentable and no therapist ever has to return 15 to 20 years later to clean up the mess when the trauma they started finally comes to full fruit.

Every oppressive system has many, many good people in it. People get caught into systems in so many different ways. I will never deny that there are good people out there practicing ABA. But there are far more people out there damaging children because they are working from within a system that, by design, damages people. In the end, the good ABA therapists don’t matter. I mean, they matter as human beings and I feel for the struggles they will face if we manage to get rid of ABA and they have to re-certify in something else.

But it doesn’t matter that there are good people doing good work in ABA. The system is so flawed and so damaging those few good apples aren’t worth taking on the whole rotten barrel.



The “With Autism” Series

A friend showed me an article today: Study: Drivers With Autism Just As Good As Other Motorists. My friend joked that they needed a bumper sticker that said “Autism is my co-pilot” since they were clearly driving with autism (as opposed to driving while Autistic.)


autism is my copilot

[image description: a square white sticker that says autism is my co-pilot.  Available on Redbubble by clicking the image or clicking these words.]

A 2018 study found that “Drivers With Autism Just As Good As Other Motorists”. A friend pointed out that if you’re driving with autism, autism is your co-pilot. Now, most Autistics I know don’t drive, but if you’re one that does drive celebrate by putting this sticker on your vehicle, letting the world know that, hey! you’ve got this driving thing down. After all, you’re with autism!

After getting their permission to “steal” that brilliant idea, more ideas kept coming. There are so many ways to be with autism, after all.

You’ll need someplace to store and carry that autism you’re with:

Autistic people can go about our lives without a care, but the moment someone insists we are really a “person with autism” we have to figure out where to put our autism so we don’t accidentally leave it behind at home. Enter the autism bag. A clear label warns others to stay away from your autism while sturdy straps allow you to carry your autism along everywhere you go. The stylish accessory every person (with autism) needs.

Caution Autism

[image description: a teal drawstring bag that says Caution! this bag is filled with autism. Available on Redbubble by clicking the image or clicking these words.]

caution autism

[image description: a purple tote bag that says Caution! this bag is filled with autism. Available on Redbubble by clicking the image or clicking these words.]

But I hadn’t quite captured the full zeitgeist of person-first language. There needed to be a t-shirt that acknowledged the autism accompanying a person. And here it is:

I'm with autism

[image description: a red t-shirt that says I’m with autism and has a hand pointing to the left. Available on Redbubble by clicking the image or clicking these words.]

Are you an Autistic who keeps getting called a person with autism? (Is being with autism like being with child?) Tell the world that you are here with autism. Autism is evidently right next to you. “What, you can’t see it? How can that be possible? I am clearly a person. With autism.”

In case it’s not clear, all these designs are satire, meant to snark a little bit at person-first language with its assumption that autism can be sifted out of a person and set off to the side as something incidental that “just happens” to exist but “doesn’t define” the person who is carrying it around like a pet or an accessory.


Guest Post – Spectrum: A Story of Mind

The following is a guest post from Noah King, a review of the film Spectrum. Enjoy!

Spectrum: A Story of Mind
a review by Noah King

Spectrum is beautiful. Never before have I seen such a story that can simultaneously educate and emulateSpectrum film logo autism as a subject so well. It’s everything I could have asked for, as someone diagnosed on the autism spectrum myself.

To think that a video like this could be constructed, and shown all over the country, is astonishing to me. As recently as a few decades ago, autism as a subject was still very much misunderstood and isolated – defined as an explicitly incorrect way of living life. To see the strides we’ve made as a population in such a relatively short amount of time is uplifting, enthralling. In a way, this video is a culmination of the suffering endured by those under autism’s great umbrella of coverage and influence – individuals such as Temple Grandin, featured in Spectrum, who grew up in such a whirlwind of sensory issues and miscommunications, what have since sufficiently climbed the ladder of society, the hard way. It’s these individuals that have spurred forth the research and development of treating and working with autism, as well as several other mental conditions, including ADHD and ADD. Spectrum is, in essence, our story, and our answer to the question, “What do you mean, you don’t think that way?”

And this is where Spectrum is given its true strength – empathy and understanding. I have to give congratulations to the amazing editors, musicians, artists, sound designers, and other technical staff who worked on this film, for how they’ve helped to demonstrate autism to neurotypical persons. Autism is a sensory kerfuffle, a nebulous and omnipresent shifting of sights, sounds, smells, tastes, and feelings. And so too is Spectrum – we have bizarre animations, startling imagery, heightened and disturbing sounds, bizarre movement, the list goes on and on. All of this, featured between footage of persons with autism – the type of people usually dismissed from an off appearance, or a noticeable difference in intelligence or social skills. These are the experiences these people endure for most of their lives.

Most important is a breaking of stereotype – the people shown all exhibit widely different forms and variations of autism. We have developing children, and we have adults holding successful jobs. We see communication disorders, lack of eye contact, a severe response to stimuli, inability to speak, and, most importantly, we have people who have broken the mold – people like the martial artist featured in Spectrum, who have utilized their autism in their career. We have the potential to become so comfortable in our own skin, the line between the neurotypical mind and the divergent mind will blur. This is what Spectrum concludes on – having journeyed from developing children to adults of various dispositions, various careers. The effect is all at once demonstrative of autism, as well as demonstrative of how much we’ve come to learn about it.

This movie was phenomenal. It’s an excellent primer concerning autism and autistic people for those unfamiliar with it. I’m happy to see it – the movie is proof of how far research on the Spectrum has advanced over the years. If it were up to me, Spectrum ought to be shown in all classes dealing with mental disabilities or development.

Barriers and Supports to Autistic Success

dashboard cat

[image description: Fermat the Wonder Cat, a mostly black cat with white on his paws, chest, and lower lip, reclines on the dashboard of a car, looking alertly out the window at ducks that we can’t see. Photo copyright 2018, Maxfield Sparrow]

I’ve been thinking a lot lately about success and failure, how they are measured, and what leads us to achieve our goals. Last week, I recorded a two-part casual chat about why I don’t believe in the concept of willpower and put it on my YouTube Channel. Part OnePart Two. This week I got a mass email from someone named Benjamin Hardy who wrote a book called “Willpower Doesn’t Work: Discover the Hidden Keys to Success” and in that email he listed four reasons people struggle to achieve their goals.

I found his list of four reasons so intriguing, I wanted to talk about them today, in the context of autism and why so many of us struggle to achieve our goals. It has nothing to do with willpower and everything to do with barriers and supports as you’ll see. The section headers come from Benjamin Hardy. The discussion is my own.

You’re internally conflicted, and haven’t made a committed decision about what you want in life.

I have talked to many Autistic people who struggle with this. One way it gets put is, “they say that we all have a special interest, but I don’t have one. I am not a savant, I’m not good at anything. I guess I will just go nowhere in life because I don’t have any gifts.” Yes, I’ve heard that almost word-for-word from people and it’s devastating to hear. There is so much despair, depression, and desperation in those words. There is probably a good measure of self-loathing mixed in, too.

In part, this thinking comes from how we talk about autism. Look around you at the fictional media, the books, the documentaries. There are typically two types of Autistics portrayed (there are exceptions, of course, and they are delightful. But I also notice them quickly fading into obscurity. Maybe because people don’t know how to think of them in the current set of autism narratives we end up working with?)

One type is the super-achiever. The fictional doctor savant. The amazing artist or designer or Nobel-awarded professor. There is a very good reason that we like to talk about these people, whether fictional or real-life. Autism is a diagnosis and it is typically defined by deficits. Showing people who achieve amazing things — often things that would still be amazing if a neurotypical achieved them — helps counter the public image of autism as something devastating and horrible, a burden on families and society, and so on. The down side of this sort of portrayal is that it primes people to think of Autistic people as only having value if they accomplish amazing things. It commodifies Autistic people in a way that the average person is not. It sets up a lot of pressure to achieve. And it opens the door for despair in both parents of Autistic children who do not seem likely to discover the cure for cancer and Autistic adults who are struggling to find something they can excel at.

Of course the other main depiction we see of Autistic people is the deficit depiction. That is the portrayal that gets funding. It’s the portrayal that miserable people sink into when they feel depressed about their child’s development and future prospects. It’s the portrayal desperate people promote when they are afraid for what will happen to their children after they, the parents, are gone and can no longer protect them. It’s the narrative that gets emphasized when caregivers want to make sure you know just how hard their life is or charitable organizations want you to know just how badly your donations are needed.

The vast majority of Autistics occupy a space in between those two narratives. Those are the narratives of function labels – high functioning and low functioning. I sometimes joke that I am a middle functioning Autistic, but it’s more than just a joke. Function labels are useless and damaging. Most of us are somewhere in between the two extreme narratives and our skills and struggles are not static positions on a number line spectrum. We are not a function label at all. We are individual human beings with individual profiles that cannot be so easily classified with the cardboard cutout portrayals of autism that are so ubiquitous and try to pass for “awareness”.

So some of us will have a fierce passion for writing or geology or medieval history or fluid mechanics or something marketable, but just as many of us will have a fierce passion for license plates or toilets or Harry Potter fandom or Sesame Street or something else not so marketable. And there isn’t a lot of mentoring about how to turn our passions into careers, especially for those with passions that are not so simple to convert to a college major or trade school path. And some types of therapies even teach parents to withhold our passions to use them as rewards for learning other things or simply to prevent us from “obsessing” on something because we don’t look “indistinguishable from our peers” when we’re really excited about the etymology of a word or the shape of a horse’s withers.

Work initiatives for Autistic people are currently aimed at Autistics who have a clear and obvious marketable skill, like computer programming. Whilst this is fine, and many who are an Autistic may end up choosing to click here and work for a firm that is based on computers, it can be restricting. And even those programs are understaffed and thin on the ground. There’s nearly nothing for an Autistic who wants to work but has no idea what they might be good at. We need to start paying more attention to the massive “excluded middle” of Autistics who are languishing because our current autism narratives leave no room for people like us to exist.

You aren’t invested enough in yourself, your values, and your goals.

It’s really hard to invest in yourself when you feel worthless. And it’s really hard to keep feeling worthy when you exist in a world that compares you to diabetes and cancer, that regularly talks about how many millions of dollars you cost to society, that describes you as a burden. I have heard charitable organizations say their goal is a world without autism. I have watched again and again when a parent murders their Autistic child and is treated like a martyr and offered sympathy and understanding.

Words have a real impact on us and the kind of words we hear about ourselves every day are terrible. When April — Autism Awareness Month — rolls around, the constant stream of negativity we’re exposed to gets turned up to a firehose intensity. And it’s no mystery what sort of effect those kinds of words have on us.

Health care does not adequately serve our needs and too many of us languish in depression and suicidal despair. Our lifespans are cut short as a result of stigma and neglect. We are struggling and suffering and unnecessarily dying. We are murdered by caregivers and law enforcement. Our homeless rates are dramatically higher than the general population’s. Life is pain, yes, but it often seems like Autistics got a double serving of it.

And n the midst of that ongoing crisis — myriad individual crises and a crisis of our entire people — it is not so surprising that we struggle to invest in ourselves and our goals.

Help the Autistic people in your life to believe in themselves. Support them like a springboard supports a diver. Nurture their sense of self-worth. Mentor them in a path pf self-discovery and growth. Help our people. Help each person. The odds are stacked so heavily against us. Don’t add to our burdens; help tear down the walls that stand in our way.

Your environment opposes your goals (most people’s environment is pushing against them, not pulling them forward).

Most people face barriers and environmental resistance, true. But hopefully I’ve helped you to see just how many barriers we are facing. People talk about autism as an “invisible disability” and our barriers seem to be invisible to many people, too. But our barriers are real. No amount of shaming a person or telling them they need to straighten up and fly right is going to remove those barriers we smack up against. So often we can’t even see the barriers ourselves and we are the ones most affected by them.

I was genuinely baffled for most of my life about why I struggled so hard but couldn’t seem to succeed. I would get angry with myself and think I just needed to try harder. I attributed my lack of success to a lack of self-discipline, a deficit of willpower. It was only after learning that I am Autistic and learning about the many barriers disabled people face that I started to understand how systemic my struggles are. You can see a physical disability and in that moment you have full understanding of their situation as you have seen the proof. And although it is easy to search for an ‘NDIS provider near me‘ or find the support to provide care and supervision to these disabilities, these people do have more understanding from society and the public. With autism and other learning disabilities it is different. You can’t always believe what you can’t see. And yes, I do have to show up and put in the effort, but much of the weight holding me back comes from society’s judgments and hampering rules, not from my lack of effort, commitment, or drive.

Sure, there have been times in life when I’ve just laid down and given up. But who wouldn’t falter in the face of such overwhelming opposition? Even now, as my life finally seems to be finding a path through the minefields of life, my future is in question. I found my passion (writing, teaching, offering emotional support) and I figured out a way to make all the pieces fit but I might not get to go to grad school for the training and connections I need to make my business plan a reality because I’m held back by old medical debt. Poverty, itself, is a sucking pit of quicksand that keeps people — of all neurologies — needlessly mired within it.

(Quick shameless plug: if you want to help me with that debt so I can go earn my master’s degree, share and donate to my GoFundMe. Thanks.)

If you have been battering yourself against your environment and getting angry with yourself as a result, stop blaming yourself for the ways the world makes things so hard for you. Ask for help. And when you get that leg up and finally break through the barriers, don’t forget to reach back and help pull others over the ramparts. We can storm life as a team. We need to have one another’s backs.

If you are watching an Autistic person flinging themselves against obstacles, help them get around or over the obstacles. Don’t judge them, even if you feel like their solutions are obvious. They are not wilfully ignoring the solution. Don’t leave someone to wither and die because you think they ought to know better. Sometimes we need help seeing “the obvious”.

You’re trying to do it alone — willpower is an individual battle, and you can’t make positive permanent change by fighting silent battles. The opposite of willpower is connection — you need an environment and the right people to help you change.

It all comes down to support. You can’t live our lives for us, but we need you to help us figure things out. We need people in our lives who are not dragging us down or holding us back but encouraging us forward.

One thing I’ve noticed about my own life with a developmental disability is that I am an incredibly late bloomer. In my 50s I’m finally beginning to tackle things that average people address in their 20s. I sometimes joke that I might get it all together by the time I’m laying on my death bed, but that’s gallows humor. It’s whistling past the graveyard. It’s my own struggle not to be devastated by missing out on so much in life because I wasn’t ready when I was at the proper age and had no mentors to help me through and have no access now because I’m too old.

We are late-ripening fruit and it’s criminal how many of us are left to rot on the vine.

We need a network of supportive people — our own Autistic people and truly supportive friends and family — to help us achieve our goals. We need to reach out for help and we need help in reaching out because asking for assistance is not typically in our wheelhouse. We struggle so much because we are people who need help asking for help.

We need mentorship with money. Not just budgeting it, but negotiating it. I can’t tell you how many Autistic people I’ve talked with about the incredible difficulty of asking for a raise, requesting a fair speaking fee, invoicing clients (although this can be made easier by using invoicing software which will do all the hard work for them), or bartering while buying and selling. Being assertive about money is a skill we struggle to learn and some may require the help of credit counseling and further financial education to become financially savvy enough to cope. The ever-present battle to maintain feelings of self-worth isn’t helping.

We need to be surrounded by people who are celebrating our victories instead of pressuring us to achieve the victories they think we ought to. We need guidance from people who truly understand what it means when we flop limp onto the floor. We need people who help us grow at a healthy pace, not people set on breaking us down so they can rebuild us. Break us down at your own risk. The pieces don’t always go back together once you break us enough.

What I’ve written here seems particularly bleak because I’ve put so much focus into what holds us back from achieving our goals. But I think it’s important to make those barriers visible because we can’t get the support we really need until we and those around us understand what we’re up against. To support us, you need to know what you’re supporting us through.

And I hope you do choose to support us. We are fighting for our lives but we can’t break through alone. We are storming the gates without a key. Unlock some doors for us. Let us in.

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.) Social security measures can be difficult for people to deal with and understand, there are sites like simplywise.com that can help with giving more information to those who are struggling. I wish this had been made visible to me sooner so I could have seen what it was about.

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. I know that it’s not just me who has faced some struggle in receiving their monthly social security benefits. Many people who are eligible for SSD instead may want to enlist the help of someone similar to Crest SSD, who will be able to support them in their application to the SSA in the hopes that they receive what they are rightly owed. As I would hate to see others going through what I went through. It’s not a nice process. 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. With all the books that I’ve got in the pipeline, I hope my Book Designer is prepared for the onslaught of work coming their way – I’m hoping for some great designs that will help catch the eye of potential readers. 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.



[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.”


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.

« Older posts

© 2021 Unstrange Mind

Theme by Anders NorenUp ↑