Unstrange Mind

Autistic Author, Artist, Advocate, and Speaker

Author: unstrangemind (page 1 of 4)

Autistic Shutdown Alters Brain Function

spanish moss

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


This is a re-post of a blog post that was originally posted on March 30, 2016.  Other than editing pronouns, it is identical to the original text.

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

 


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

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

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

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

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

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

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

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

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

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

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

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

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

What Would An Astronaut Do?

cloudy sky

[image description: looking out into space from planet Earth during daytime.  In the upper left corner of the picture, tree branches are silhouetted against an ethereally glowing sky. The late morning sun is hidden behind a low-hanging bank of clouds, illuminating them against a sky that ranges in intensity from clear aqua to dark lapis. Photograph copyright 2016, Sparrow R. Jones, Taken in southeastern Gainesville, Florida.]


I winter in Florida, because it’s warmer and where my mailing address is.  Although I am nomadic, my official state of domicile is Florida.

I winter in Gainesville, because the city has laws to protect people like me. So long as I am legally parked, it is not against the law for me to sleep in my vehicle in Gainesville. This may seem ordinary if you’ve never tried living the way I do, but most clement places enact measures to keep “undesirables” under control. Every major city in California now has anti-homelessness laws on the books that were written to protect the people who do not like to see homeless people in public (rather than being written to protect the actual homeless people, themselves.)

If I wintered in California, I would regularly be at risk of having my van impounded as punishment for living in it.  I know, I know. It makes no sense to fight homelessness by taking away someone’s shelter. But it’s a real risk in many places. As for Texas, I have been hassled by the police after spending 18 hours at a designated campground.  I’ve never been bothered here in Gainesville for openly living my mobile lifestyle.

Gainesville is also a safe place to transition my gender expression. The mayor of Gainesville, Lauren Poe, recently wrote on Facebook: “If you are trans and feeling under threat, come to Gainesville. We respect you, love you and if need-be, we will protect you.” In a nation that seems obsessed with which bathroom I use, it is a great comfort to spend my winters in a city that added “gender identity” to their anti-discrimination laws in 2008.  Gainesville is a safe place and I can feel my spirit grow when I spend time here.

This winter, I read (in audiobook format) Andrew Chaiken’s epic 1994 book about the Apollo missions, A Man on the Moon, as I drove around Gainesville’s streets filled with murals and quirky folk art. When Mr. Kitty and I take a night trip down 8th avenue, through the Solar Walk, I like to imagine that we are traveling through space in our Escape Pod.  The sculpted concrete stars and planets on the sidewalk beside us are heavy echoes of the originals, gleaming high above. We are surrounded by stars.

It was on one of those night runs down the Solar Corridor that I realized my current life motto: What would an astronaut do?

I have been on a quest the last several years to improve my emotional self-regulation. I have progressed tremendously as anyone close to me will readily attest. What would an astronaut do? An astronaut would remain calm, particularly in a crisis.  An astronaut would not give up when faced with a problem, but rather think things through, logically and carefully, finding tools in his environment to achieve his goals.

The Apollo 13 mission nearly ended in as much tragedy as the Apollo 1 mission.  A cabin fire in Apollo 1 killed all three astronauts — Grissom, White, and Chafee — on the launch pad in 1967.  For a time, it appeared that the pilots of Apollo 13 — Lovell, Swigert, and Haise — would suffer a similar fate after an oxygen tank exploded, two days out from Earth, damaging the Service Module, thus also rendering the Command Module useless.  The interior of their spacecraft began losing life-sustaining heat quickly, water was in short supply, and the astronauts were at risk of asphyxiation from their own exhaled carbon dioxide.

What would an astronaut do? Get on the radio and calmly announce, “Houston, we have a problem here.”  Troubleshoot the problem along with help from Houston.  And build a carbon-dioxide scrubber out of a flight manual cover, parts from their space suits, and a pair of socks.

I have been working to incorporate the lessons of the Apollo astronauts into my daily life:

Stay calm.

Maintain logic and problem-solving skills such as flexible thinking and improvisation.

Focus on the mission.

I’ve particularly been spending a lot of time thinking about what it means to focus on the mission.

Focusing on the mission means that the activism and advocacy work we Autistic adults and non-autistic parents of Autistics are doing is more important than interpersonal squabbles.  Sometimes we have goals so incompatible that we cannot work together, but whenever I am seeking the same goal as someone else, it is important for me to promote their work, no matter whether we get along as individuals. Focusing on the mission means trying to get along with everyone, but also staying socially detached enough to avoid allowing my feelings about a person affect my respect for their work.

I was writing something the other day, in which I mentioned “my mission.”  I have been thinking about my mission for a long time and, more and more, I have been wanting an actual mission statement. I talk about being on a mission, but I don’t always communicate that mission in specific, clear terms.

So I would like to take this opportunity to share my mission statement:

-=+*+=-

Pre-amble:

All people have inherent worth; human life cannot be valued in the coin of productivity. What makes people matter is that they exist.

There are no “special needs.”  All humans have needs and by calling some needs “normal” or “ordinary” and other needs “special,” we set one group of people aside as potential “burdens” who should be grateful for the “special treatment” they get.

Access is crucial for full participation in society.  The principle of universal design must be extended to all, making all public access accessible to people regardless of mobility, neurotype, physical appearance including race and size, gender, communication style, support needs, and more.

Respect autonomy and presume competence. The children of today must not be forced to suffer tomorrow the things we endured yesterday.

I yearn to hand an oxygen mask of survival and a flotation device of self-worth to every human being.  I can only achieve this work if I keep one oxygen mask and one flotation device for myself.

Mission:

My mission is to work every day to maintain my own survival so that I can help others maintain theirs. My mission is to add more love to and remove more stigma and misunderstanding from the world. My mission is to join every day in the effort to shift society’s views to a more compassionate, understanding, accepting position from which diversity can truly be celebrated rather than feared.

-=+*+=-

This is my mission and every time I ask myself,  “what would an astronaut do?” and the answer is “focus on the mission,” this is the mission.  This is what I am striving to draw more of into my life and, through me, into the world: more love, more understanding, more thriving.

And now I must carry on with the mission. Do carry on with yours and insofar as our missions intersect, may we always merge our efforts and achieve greater success than we each could have grasped alone.

Alexithymia: I Don’t Know How I Feel

exeter flowers

[image description: some white flowers, species unknown, in a graveyard in Exeter, Rhode Island. Image copyright Sparrow R. Jones]


When I was a child, my mother would angrily ask me why I had done or said something and I would respond, honestly, “I don’t know.” This response did nothing to relieve her anger because she couldn’t conceive of someone not knowing why they behaved the way they did, so she assumed I was lying and just didn’t want to incriminate myself by revealing my true motivations.

 

Sometimes now, from a distance of decades, I can explain my behavior. Time, experience, and an increased vocabulary have helped me to understand my younger self better and be more well-equipped to communicate my childhood thoughts than I was at the time.

 

But just as often, I still have no idea why I did or said the things I did because I still have so little connection with or understanding of my emotional life, both in childhood and today.

 

I have a condition called alexithymia. The name comes from Greek roots: a-, meaning ‘without’, lexi, meaning ‘words’, and thymia, meaning ’emotions.’ Without words for emotions.

 

That’s a pretty good name for it, because that’s pretty much what it is. I do have emotions — quite strong emotions, in fact. Much stronger than I wish they were. But when I try to understand what I’m feelign or why I’m feeling it, I am at a loss.  I can generally tell you (sometimes after pausing to do an internal assessment first) if I’m generally feeling “good”  or “bad.”  I can usually put words to the emotions that are painted in very broad strokes: happy, sad, angry. But that’s about the limit of my emotional vocabulary.

 

To me, emotions are like storms at sea.  They are mysterious and unpredictable. I feel like I can go from zero to furious in 0.4 seconds because I am unable to see all the intermediate shades of emotion along the route to furious, so when I finally arrive at that destination, it feels to me as if it came out of nowhere.  I think it often seems that way to onlookers as well, because my Autistic style of emoting is not always very easy for people to understand.

 

I regularly get feedback from others who have interpreted my “contented”  as “distraught” (it’s called “resting face,”  people.  Mine apparently has a sad/angry tone to it, so I have learned that I have to intentionally add artificial smiles to my face if I don’t want others to accidentally mis-read me as dangerous and unapproachable.) I’ve also gotten feedback from people who see “nervous”  or ” anxious”  when I am actually “energetic and happy.”  It’s called stimming, folks…..it’s not always a sign of anxiety in people with my neurology. Ironically, I have been riddled with anxiety but when I discuss it with someone who doesn’t know me extremely well, they think I’m exaggerating because they can’t see the external signs of anxiety they are accustomed to reading from non-autistic people’s body language.

 

I try my best to live in the deep waters beneath that stormy surface. Meditation helps a lot.  My role model is Mr. Spock from Star Trek.  Vulcans have emotions but practice meditation and other rituals from an early age to learn to control their emotions rather than allowing their emotions to control them.  I work hard to replicate fictional Vulcan emotional training as best I can in my frustratingly non-fiction  human life. Sometimes it even works.  I get better at it as time goes on. But I still “lose it”  on a regular basis.  It’s a work in progress.

 

A 2016 article in Scientific American says that 10% of the general population has alexithymia while 50% of Autistics have alexithymia. I have seen other sources estimate higher numbers, but 50% is a good, conservative estimate.  My reading indicates that alexithymia in the non-autistic population is very oftne the result of an emotional trauma.  No one (to my knowledge. If you know of a case, please share it in the comments) has studied whether Autistic alexithymia is the result of emotional trauma (which wouldn’t surprise me, since growing up Autistic in a non-autistic society can be intensely traumatizing) or whether it’s part of how many of us are wired.

 

The difference — autism with or without alexithymia — could explain many of the differences among Autistics, for example, it might be part of the explanation for why some of us (like me) avoid eye contact while I’ve met lots of other Autistics who report having no trouble at all with making eye contact with others.

 

Having alexithymia (and some states-of-being that seem closely connected for me, such as a very low level of body-awareness) means that when I figure out that I am feeling bad, I have to play detective to try to understand why I am feelign bad and what, if anything, I should do about it.

 

I have developed a sort of check-list to help me navigate the experience of being embodied.

 

First I have to figure out if I am in need of my checklist. Here are some of my warning signs that I’m not functioning optimally:

 

  • I am screaming
  • I am crying
  • My body is shaking
  • I am obsessively going over unpleasant past memories
  • I am spontaneously (meaning I am doing it during my personal time, not as research for something I am writing) conducting Google searches  on topics related to unpleasant human interactions and how to cope with them
  • I am dizzy or experiencing some non-typical (for me) cognitive difficulties
  • I have lost the ability to speak
  • I find myself unwilling to go someplace or do something I either enjoy or know that I need to do in order to keep my world intact (like the tax office or the social Security office)
  • I am not sleeping (or sleeping too much)
  • I am not eating (or eating too much)
  • I am constantly thinking bad thoughts about everything the people around me are doing

 

These are my main warning signs that I need to run a self-diagnostic check.  If you have similar difficulties to the ones I discuss in this essay, you might want to write out your own list of warning signs.

 

My diagnostic checklist starts with medical emergencies and works its way down from there.

 

  • Check my blood sugar
  • Check my temperature
  • Assess whether I need to use the bathroom (strange though it may sound to those who don’t experience this, I am often unaware of physical needs unless I specifically direct my attention to the body I live in and focus on the physical sensations it is experiencing.)
  • When did I last sleep? Am I sleep deprived?
  • When did I last hydrate?
  • When did I last eat?
  • Am I experiencing an emotion? Try to discern whether it is mostly anger or mostly sorrow. Continue to break it down from there, looking for physical clues.

 

A book I’ve found helpful in this last task is: The Emotion Thesaurus.  It is a book for writers and it includes descriptions of the physical things that happen to the body when experiencing 75 different emotions. I would love to have the emotion body responses turned into a deck of cards I could carry in my pocket.

 

The only emotion cards I’ve ever seen are profoundly unhelpful for me because they just have things like photographs of human faces experiencing feelings (useless for me as I can’t read feelings from a photograph) or even worse, cartoon drawings of emotions.  I need the body experience descriptions like in the Emotion Thesaurus to help me identify the emotions my body is having.

 

Usually by this point in my checklist I’ve found my trouble.  If not, I just try to do what I can to mitigate the damage — isolate myself from others, be kind and nurturing to myself, try to dive beneath the surface if I can and if I can’t, I try to wait for the storm to blow over and the sea to become calm again.

 

I wish I had more to say about emotions and alexithymia, but I’ve pretty much hit the end of what I have on offer for this topic.  If you’ve read my blog for very long, you’ll realize what a statement that is, because my standard blog essay is twice the length of this one.  Struggling with emotional lability and alexithymia has been the battle of a lifetime for me and I sometimes wryly joke that I’ll finally get it figured out when I’m lying on my deathbed at 120 years old.  Things do seem to be getting better, though. My 40s have been much better than my 30s.  My teens and 20s were such horror shows I’m amazed I survived them. I predict my 50s will be my best decade yet.

 

If you’re a parent and you’re struggling with your child’s emotions, you might feel like life is punishing you, but I’m here to tell you that the real hell is the one your child is living through.  I know it’s hard to be gentle and understanding with someone who yells and throws things, hits and bites. But I’ve been that person for a lot of my life and gentle understanding is exactly what we need most.  Help your beloved person learn how to trouble shoot and do self-checks.  Help them learn how to decipher and name emotions.  Help them find emotional management techniques that work for them.

 

Don’t get upset if they reject meditation or breathing techniques.  We’re all different and some Autistics get *MORE* anxious when they try to use these tools. Don’t be afraid to try medications but work to avoid “drugged zombie”  as a chosen result.  It might be easier for people around us when we’re doped out of our emotions, but it’s not good for us.  Vow to only use medication that enhances an Autistic’s life and coping skills, and never use medication or dosage levels that operates as a “chemical straitjacket”.   Our responses to medications are often non-standard so be prepared to experiment with much smaller (or much larger) doses than other people need.  For example, Temple Grandin recommends using only a 1/3 dose of anti-anxiety medications when prescribing for Autistic people.

 

I hope something, anything, I’ve written here is helpful to you.  I’d love to see a lot of discussion in the comments section.  This is a topic I’ve struggled so hard with  that I feel inadequate to even address it at all.  But it needs to be said, so here I am saying it.  Be well, gentle readers, and may your emotions ever serve you rather than the other way around.

 


edited to add:

A linkback from another blog that linked to this post included a link to an alexithymia questionnaire that quanitifes one’s level of Alexithymia.  I scored 149, “high alexithymic traits.”

 

The other blog entry is: Can you name all those emotions?
And the emotion blindness questionnaire is: Online Alexithymia Questionnaire

Stop “Diagnosing” Donald Trump

campfire

[image description: a small campfire burning in the dark night. Copyright Sparrow R. Jones, 2017]


Everywhere I turn, it seems, someone is calling the current United States presidential administration “crazy” or “insane.”

Do you not realize that these are slurs along the lines of The R Word? Do you not realize that everything I have ever said about the R Word applies to the C word and the I word as well? Using words that describe vulnerable populations to describe the actions of those who are not members of that population who are engaging in behavior that displeases or distresses you is the verbal equivalent of picking up a disabled person to use them as a bludgeon. You’re not likely to hurt your target but you are crushing those of us who become your lazy go-to when you can’t find the words you really want.

“But wait!” someone always responds. “You don’t understand! He really is crazy! He’s got Narcissistic Personality Disorder! A psychology professor said so!”

First off, that professor was behaving unethically if they diagnosed Donald Trump without even meeting him.  There is a rule in the psychiatric professions called the Goldwater Rule, so called because it arose after similar speculations were made about Goldwater.  Section 7.3 of the APA Code of Ethics says:

On occasion psychiatrists are asked for an opinion about an individual who is in the light of public attention or who has disclosed information about himself/herself through public media. In such circumstances, a psychiatrist may share with the public his or her expertise about psychiatric issues in general. However, it is unethical for a psychiatrist to offer a professional opinion unless he or she has conducted an examination and has been granted proper authorization for such a statement.

That means that it is unethical for a professional to announce a diagnosis of Donald Trump. And if you are not a professional, you are not qualified to diagnose Donald Trump.  The only people qualified to determine if a person has a psychiatric disability are trained professionals and the individual themselves.  Furthermore, revealing a person’s diagnosis without their explicit permission is a violation of HIPAA regulations specifically and a violation of privacy in general. No one has the right to disclose another person’s medical information without their consent.

Secondly, if someone you view as having authority has told you that Donald Trump has Narcissistic Personality Disorder (NPD)  (or if you have taken it upon yourself to  lay-diagnose him as such), you are wrong.  The doctor who wrote the diagnostic criteria for NPD  has publicly stated that Donald Trump does not meet the criteria. Dr. Frances goes a step further and explains why these casual lay-diagnoses of public figures are so harmful. You really should read his words: This Doctor Nailed The Problem With Diagnosing Donald Trump With Mental Illness.

I have even seen some people suggesting we “push for Trump to submit to psychiatric evaluation.”  Forcing psychiatry on an unwilling person is the height of human rights violations.  I never thought I’d find myself in the position of defending and protecting Donald Trump, but society has put me here by insisting that the basic human rights we hold so dear do not apply to him. Call him evil, call him authoritarian, call him a fascist …. but do not suspend his human rights unless you are willing to see your own human rights suspended next.

It is unethical to diagnose a person without an examination, regardless of credentials or lack thereof.
It is a human rights violation to attempt to force a person to submit to psychiatry against their will. Some reading in the psychiatric survivor literature will help you to understand what a gross violation it is.
Fighting dangerous leadership by weaponizing psychiatry against the president will only serve to hurt vulnerable Americans as those arrows will be twisted by the government and turned against us.
We already have a Vice President who supports the use of involuntary “anti gay therapy” against minors. We do not need to use their evil tactics against them. We can fight evil without becoming evil.
Study authoritarian regimes in other countries and other decades and you will see psychiatry repeatedly being weaponized against the resistance.  Audre Lord said “the master’s tools will never dismantle the master’s house.”  Nick Walker brought that philosophy into the battle against the pathology paradigm with the essay “Throw Away the Master’s Tools.”
Authoritarian dictators are the ones who routinely weaponize psychiatry to silence the Resistance. Those aren’t the tools we need to be using to dismantle the master’s house.

My Life Is Not a Tragedy

This is a re-post of a blog post that was originally posted on January 13, 2014.  It has been slightly edited from the original: I have come out as transmasculine since this essay was first published and so I have changed my pronouns in the essay accordingly. I have also added a clarifying side note to make sure readers know that I do not believe any human being at all, ever, is a tragedy!


my life is not a tragedy

[image description: A green bordered meme tile for #boycottautismspeaks and #PosAutive Action for Social Justice that quotes this essay, saying “My life is far too complex — and far too beautiful — to ever be mistaken for a tragedy.” – Soarrow Rose Jones]

I am a person who tries my hardest to give everyone the benefit of the doubt. I realize I have a strong streak of suspicion in me, so I aim for the best possible view of others and attempt to judge them innocent until proven guilty.

Lately, the organization named Autism Speaks has worked really hard to provide me with that proof. Exhibit A: The  “Call to Action” by Suzanne wright (the co-founder of Autism Speaks) that said that I  and those like me are unspeakable horrors to our families who live in despair and depletion, ill and broken, because we are so awful to cope with. Exhibit B: the latest documentary film from Autism Speaks, titled, “Sounding the Alarm.” For an organization that tries to claim they are not alarmist, that is a pretty fishy film title, right?

Those of you who have followed my blog for a while know that I was an incredibly difficult child to raise. I’ll be honest: I pretty much did deplete my mother (although she has bounced back quite beautifully these days.) And you know I’ve had a hard life, with bullying, abuse, poverty, homelessness, and chronic unemployment. But you know what else? I would estimate that 90% of my difficulties in life were not caused by being born Autistic — they were caused by other people not coping well with who I am. People who don’t like the way I move, the way I speak, the things that catch my interest end up pushing me and bullying me and excluding me in ways that make my life miserable. Most of the “tragedy” of my life was completely avoidable if everyone around me had been encouraged to be a little more open-minded and discover the incredibly loyal friend or the hard-working and dedicated employee behind the quirky behavior and different way of viewing the world.

You see, my life only becomes a tragedy when someone else chooses to frame it that way. And that is objectifying toward me and people like me and I will explain to you why I feel that way.

Human beings — at least those living in industrial “Western” culture — have basically two ways to view lives. There are lives, plain and simple. These are what they are living, what their friends and family are living. Regular lives have ups and downs and long, welcome stretches of “boring” everyday stuff. There is no overarching framework because they aren’t stories; they are lives.

Stories are the other way to view lives. We view imaginary lives that way all the time when we watch television and movies. We also frame certain people’s lives as stories when we write about real people in books or magazines. Stories do not have long stretches of everyday “boring” regularity, because stories are about heroes and villains — stories are drama and drama is shaped by our theatrical forms that box everything up as Comedy or Tragedy.

You’ve seen the masks, right? The iconic symbol of the theater with one mask laughing in hilarity and the other weeping openly. This is how we frame stories and this is why people who want to box me up and objectify my life so often strip all the complexity out of my “story” and try to fit it into comedy (“look at that ridiculous ******!!”) or tragedy (“Poor thing, he’s so pitiful. It’s inspirational to me that he even gets up every morning and goes on living day after day!”) People who want my life to be a story and not just a life are required to objectify me and amputate most of my actual life to get the essence of me into that little box they need to put me in so they can make their point.

Autism Speaks’ point is that autism is evil, Autistic people are a tragedy, families of Autistic people are broken on the wheel of autism . . . oh, and give us lots of money. They try to claim that I can’t be upset about the things they say because they aren’t talking about me, they’re talking about “those Autistics.” You know, the cardboard cut-out caricatures of Ultimate Tragedy that never mature beyond infancy and thus grow up to be Useless Eaters and Burdens to Us All. I am “too high functioning” (meaning I continued to grow and develop and change throughout the course of my life and am now able to type words and lift a spoon to my mouth unassisted) and I am not who they mean. (side note: No Autistic person at all ever is that reductionist tragedy.  We all grow and develop and strive to flourish in our lives. None of us are a one-dimensional tragedy, regardless of who we are and how our humanity manifests.)

Well, if they aren’t talking about me, they need to stop counting me in order to make their massive “tsunami” declarations of millions and millions of us who are struggling and suffering (unless you give lots of money to Autism Speaks, of course. That will somehow magically stop our suffering . . . . well, no, it won’t. So they need you to give them some more money. Don’t stop yet! There are still MILLIONS AND MILLIONS of Autistics out there! Tragedy! Alarm! Crisis! Pandemic! . . . keep that money coming.)  If there are so many millions of us, then they *ARE* counting me and people like me so how dare they say I have no right to be distressed by their rhetoric about ME?

Would you like to know how *I* read the story of my life?

Sure, there are hard times. I struggle a lot. But I also accomplish and achieve a lot. I would like less struggle. I would like a LOT less struggle. But I would not like no struggle at all, because having something to push against adds to my strength. I want to have some challenges so that I can have some accomplishments. I want to have some difficulties so that I can have some growth. As Robert Browning said, “a man’s reach should exceed his grasp”. I would like my grasp to come a lot closer to my reach (wouldn’t we all?) but I want there to always be something just brushing my fingertips, tempting me to press on. I never want to fulfill all my dreams, unless I grow new dreams in the meantime. I want there to always be someplace new to go, something new to strive for. I would like those things to be new skills, new arts, new travels and people. Right now, some of those ungrasped things are more fundamental. Right now, some of those ungrasped things are unmet needs, not unlived dreams. There are hard times and things I would like to improve, but that doesn’t make my life a tragedy.

If I had to define my life in one word, it would not be “tragedy.” It would be “joy.” I have an abundance of joy in my life. I have always had joy in my life, even during the hard times. I believe I could be left sitting in a garbage heap and manage to find something beautiful there.

Suzanne Wright painted her picture of what our lives are. Let me paint a few vignettes of my own, one, single, Autistic life:

It is summer and I am walking. The brush is scrubby and dry and tiny black-and-white checkered lizards bake in the sun on flat rocks. Raptors wheel high in the sky, nearly invisible against the glare of the sun. The trail I’m on dips lower, into a grove of evergreens, and suddenly I am wrapped in the sound of scores of little birds, singing in the trees. A swarm of dragonflies seemingly materialize from nowhere and I stop walking, transfixed by the beauty of the sun glinting rainbow sparks from their diaphanous wings as they circle lazily around my head.

I am tucked away in a dusty corner of the library, reading. What am I reading? It must be a comic book of some sort, because I read intently, then suddenly burst into laughter, nodding my head and shaking my hands with excitement and happiness. Then I go back to intently reading with furrowed brow before bursting again into childlike laughter. Curious to see what is causing such reactions in me, you draw nearer to discover that I am reading a collection of dozens of mathematical proofs of the Pythagorean theorem.  That beautiful moment when all the pieces fall into place is so glorious and profound to me that I am helpless to do anything but laugh with delight when I get to that point in each mathematical proof.

I have a new musical instrument and I am exploring the sounds it makes. I am comparing it to every other type of instrument I have played before — and there are many — to see how it is similar and how it is different. Within five minutes, I play my first simple song. Within five days, I am playing as if I have been working with that instrument for months. I do the same things with languages — writing letters and poetry in grammatically correct Swedish three hours after I opened the parcel containing a Swedish-English dictionary and began studying the sentence structure of the language. I do the same thing with anything that is based on patterns because I am a pattern thinker. I do not think in words. I do not think in pictures. I think in symbols and patterns. Any process or thing that succumbs naturally to pattern thinking is an easy delight for my pattern-seeking mind and heart.

I am exhausted, so I lay down to listen to music and maybe sleep for a couple of hours. My cat gets excited to see me recline because I am creating his favorite place in the whole world — I am becoming his cat mattress. He runs to me and climbs on top and we adjust ourselves to find the spot of maximum comfort for both of us, the two of us so in tune with one another that words are unnecessary. We go beyond communication; we commune. I wrap my arms around him and bury my face in his kitten-soft fur and he purrs and wraps his paws around my head. We lay there together, two souls breathing as one, rejuvenating each other with the priceless love and trust that connects our gentle spirits.

This is my life. This is not a tragedy. I am not a statistic. I am not a pawn to be used to manipulate you into giving money to a charity that gives about 4% of its income to actually helping Autistic people and our families and gives 44% of its income to researching ways to wipe me and my kind off the face of the Earth. (And another 22% to fundraising efforts that paint us as a tragedy so that they can bring in more money to find more ways to create a world where people like me are extinct.)

 

My life is not a tragedy. My life is far too complex — and far too beautiful — to ever be mistaken for a tragedy. This is why Autism Speaks does not speak for me. I am Autistic and I can speak for myself. (And on those days when I can’t, I can write for myself. And on the days when I can’t even do that, I’m still not a tragic pawn to be moved across the board of someone else’s political and financial agenda.)

I am not a horror. I am not a destructive force. I am not a tsunami or an epidemic. I am a human being, living my complex, messy, sometimes boring, sometimes gloriously beautiful, everyday life.

My life is not a tragedy. I am a human being and we are too complex to be reduced to such abject objects. See us . . . really see us. We are priceless beyond measure. We are not tragic. Please do not assist any person or organization in attempting to reduce our beautiful and complex lives to little more than a theatrical stage show.

Our lives are not tragedies.

Who Do I Work For?

fsf

[image description: a photograph of the author at the grave of F. Scott Fitzgerald, post-processing by the app Prisma. Copyright 2017, Sparrow R. Jones]


This week I shared a lovely essay written by Misandry Angie, singing the praises of her wonderful Autistic child: The Best Kid. (It’s not long. I’ll wait here for you if you want to go read it right now and then come back.)

A reader responded that it was a great essay, except for the last two sentences.  If you didn’t go read it, I’ll share those two sentences with you now. In fact, wait.  I don’t want you to get those two sentences out of context. The sentences say “their” twice but without the sentence preceding them, you will have no idea who “they” are. So let me share the last *three* sentences with you:

I can’t sympathize with parents who are disappointed with their baby, who want to change their children with compliance training and bleach enemas, who want to crush their baby’s spirit. I can’t consider their feelings. I’m too worried for their babies.

I was understandably surprised that someone would criticize those last two sentences, so I asked the Critic if they would like to explain further. We had a cautious and uncomfortable conversation about connecting with others that gradually became more and more ‘spiritual’ on their part as it went along.  I was growing more and more frustrated because not only was the Critic dismissing my concerns but they came across as ‘holier-than-thou’ and seemed to be shaming anyone who would care more about Autistic children than about the parents who abuse and kill them for being Autistic.

When another Autistic adult joined the discussion and politely asked the Critic if they were Autistic, the Critic grew more slippery and refused to answer the question, instead choosing to spread the judgment even thicker.  Some more Autistic adults began speaking up and the original Critic deleted their comments altogether, removing the entire conversation from my page.

My short answer to what happened: if you have to tell us all how enlightened you are, you aren’t.

But you know me. Rarely do I stop with the short answer.

My conversations with close friends who had also witnessed or participated in the experience centered around who I am working for and why. The Critic highlighted important aspects of my mission and another excellent essay by Melody, Let’s Define Autistic Safe Space, drove those thoughts home after the party.

While I can’t promise that this blog, my facebook community, or my Patreon feed will be Autistic Safe Spaces, because anyone could get in and cause a lot of damage before I had a chance to remove them from the party, I can promise that keeping these online spaces safe for Autistics is the Prime Directive here.

But even though my most important readers are Autistics, my most important audience is non-autistic parents of Autistic children and adults.  This might make it seem a little confusing if one takes a casual glance to try to understand who I am working for.

I am speaking to non-autistic parents.

I am working for their children.

This is why I am on Misandry Angie’s side and chose to defend her words.  No, I’m really not here to consider the feelings of those who would try to bleach the autism out of their children. And I felt very protective of my Autistic readers during my discussion with the Critic.  I think people who are not autistic might not really understand how painful it is for us when someone sides with abusive and murdering parents. The reason that non-autistic parents of Autistic children telling us not to judge those who murder their children until we “walk in their shoes”  has become such a cliche that a popular blogger wrote a powerful piece based on that phrase, Here, Try on Some of My Shoes, is because we hear it all the time, every time another child is killed.

We hear it all the time. We hear that we should reach out to those parents (we have) and connect with them (when we do, they hurt us) and not judge them (for murdering their own children??) and understand that they are human beings (when they are not treating us or people like as as human beings).

I knew that the Critic’s attempt to shame me and Misandry Angie and anyone who agreed with the idea of being too concerned about the injured and dying children to worry about how their abusers and murderers feel … those attempts to judge and shame us were going to hurt Autistic people.

So, you may ask, why didn’t I just give the Critic a giant F you from the start?

There are a few reasons.

  1. I am trying to reach parents. The only way I can help Autistic children is to talk to their parents. Minor children are “owned”  by their parents according to the laws, culture, and morals of our society and if I do not keep the channels of communication as open as I possibly can, there is no way I can help their children.  Well, there is a way: I could lobby the government to take their children away.  But until a parent poisons or strikes their child, we have no way of knowing who is dangerous and who is just scared and looking for answers. So long as the parents aren’t harming them, children belong with their parents.  To try to remove children because a parent might harm the child is to punish thoughtcrime.  Ethically, the only way I can try to save the children is to talk to their parents and those conversations will end very quickly after I offer a giant F you.
  2. Until the Critic started judging and shaming, I had no sign that they would not be reachable.  Surely every reasonable and compassionate person could understand why someone might write that they didn’t care about the feelings of child killers because they were too busy worrying about those children? Maybe the Critic just hadn’t thought about things from the perspective of the children or the adults that earlier children had grown up to be? I had to give the Critic a chance to listen to the vulnerable side of the equation before just writing them off with a hearty F you.
  3. I actually am trying to live my life by the ethics the Critic was claiming to hold.

What?

Yes.

The Critic was insisting that we have to be open to everyone and connect with everyone.  Even in the face of being told that the idea of Autistic adults being open to emotional connection with parents who abuse and murder their Autistic children was a very painful idea to push on us, the Critic continued pushing that idea and increasing the level of shaming directed at those who were too narrow-minded or unenlightened to want to be open to and connect with everyone.

I am no better than the Critic.

I am writing this post that shames the Critic for shaming us.

But I am not a perfect bodhisattva. I am not a saint.

The bodhisattva oath is a prayer that millions of Buddhists, including the Dalai Lama, repeat every day. There are different versions of it.  This is the one Jack Kornfield shares in his book, Bringing Home the Dharma: Awakening Right Where You Are, an English translation of the one the Dalai Lama recites:

May I be a guard for those who need protection
A guide for those on the path
A boat, a raft, a bridge for those who wish to cross the flood
May I be a lamp in the darkness
A resting place for the weary
A healing medicine for all who are sick
A vase of plenty, a tree of miracles
And for the boundless multitudes of living beings
May I bring sustenance and awakening
Enduring like the earth and sky
Until all beings are freed from sorrow
And all are awakened.

I have embraced this ethic as well.

But I am not perfect.

And when I am trying to guard those who need protection, guide those who seek direction, bridge the gap between people, offer what meager rest and healing I might have….

And when there is conflict between those two….

I must choose the more vulnerable. I must side with the underdog.  I am working for Autistics. Even more, I am working for Autistic children.

I offer a listening ear and hope to be inspired to share a healing word.  I seek to be a boat, a raft, a bridge for those non-autistic parents who are ready to do the work of letting love cast out fear and acceptance crowd out abuse.

But whenever a line is drawn in the sand — as happened earlier this week when the Critic insisted that the right thing to do is to care about the feelings of murderers — I am a very poor bodhisattva because I will step onto one side of that line.  I will protect the vulnerable.

I am here to work *with* non-autistic parents of Autistic children.

I am working *for* Autistics.

Is Autism a Disability? Are Autistics Disabled? (Are These the Same Question?)

sketch sparrow

[image description: a photo of a middle-aged transmasculine person in a van, half-rendered into a sketch, using the Heisenberg setting in Prisma, turned down to 54%. Copyright 2016, Sparrow R. Jones]


I don’t like to engage in serious conversations on Twitter because I’m so quickly overwhelmed by the format, but yesterday I ended up in a corner of a discussion that spread throughout much of the Twitter Autistic community, as evidenced by this other excellent blog post addressing a different aspect of the conversation: Autism does not reside in a medical report.

My corner of the conversation centered around the question of whether autism is a disability or not. The same person who stirred Sonia Boue to write the excellent post linked above got into it with one of my Twitter contacts on a different but related topic:

Tweet by Grit Tokley

[image description: A twitter exchange. Grit Tokley writes: “I’m well aware of the social model of disability, and I don’t considering autism to be a disability in any sense, tyvm. @aspiemermaid” Autistic Elf (Aspiemermaid) responds: “@GritTokley ok. So why are you so hung up on getting it medically diagnosed?”]

So, here I am, unpacking the social model (and a couple of other models) of disability and discussing the questions: Is autism a disability? and Why does it matter whether it is or not?

Because, of course, the bulk of the following Twitter discussion centered around strong assertions that autism is not a disability, along with strong assertions that everyone is entitled to their own opinion and we must all agree to disagree.

*sigh*

So, with that.

Three Models of Disability

There are many different models of disability, but I would like to focus in on three of them as being the most mainstream and/or the most useful for various groups of people.

The Medical Model of Disability

This is the most mainstream model of disability and the one you’re most likely to have seen before. One participant in the Twitter discussion shared this definition of disability that pretty well sums up the nicest version of the medical model you are ever likely to see:

medical model disability

[image description: a white background with black text reading: “Disability is an impairment that may be physical, cognitive, intellectual, mental, sensory, developmental, or some combination of these that results in restrictions on an individual’s ability to participate in what is considered “normal” in their everyday society.”

It’s sweet of them to put the word normal in quotes. Even with that nod, the medical model is basically saying that disability is entirely contained in the person identified as disabled. It’s all on you if you have impairments that restrict you. If you’re lucky, people will have a little decency and put some ramps in front of government buildings or braille placards on elevators, but mostly you just have to accept that you’re not normal and be grateful for what crumbs people toss your way. After all, you can’t expect everyone to go to the trouble and expense of making special accommodations just for you, right? Where would we be if we had to accommodate everyone’s impairments?

That’s the medical model and that’s why so many disabled people reject that definition of disability. But it’s still a really popular definition. And, as the person who shared the image pointed out, by this definition, autism is quite clearly a disability. Something like 99.9% of the Autistics you will meet have at least one of some kind of sensory issue that makes life difficult if/when they encounter sensory assaults (or situations in which they require extra sensory stimulation in order to stay regulated.) By definition, we are developmentally disabled, whether you use the medical model’s terminology (developmental delay) or recognize our development as being on a different trajectory from the mainstream. It’s pretty clear that, within the medical model we are disabled.

The Social Model of Disability

This is the model I see most often in the Autistic activist community. The social model was developed in the 1970s by British disability theorists who did not appreciate the way the medical model dumps all responsibility for disability and accommodations thereof in the laps of disabled people. The social model was a great  improvement over the medical model, particularly in the area of human rights.

The social model posits that disability does not actually exist. Those states of being that are labeled as “disability” are natural variations in the human condition and all human beings require support and accommodation from society in order to survive. For example: you probably eat food that someone else grew, someone else processed and/or packaged, someone else drove to your region in  a truck using fuel gathered and processed by someone else, driving on roads built by others and paid for collectively through taxation. All of the steps and people required to get food to the supermarket, farmer’s market, soup kitchen, restaurant, institutional kitchen or whatever location it is where you go to feed yourself are supports and accommodations that society approves of and works hard to keep in place.

When the need is a mainstream one, the supports and accommodations are called “infrastructure.” When the need is a divergent one, the supports and accommodations are called accessibility measures. According to the social model, “disability” is a social construct and “disabled” is what society is doing to you if it decides that the supports and accommodations you require are too much trouble and you are not worth the expenditure of time, energy, money, and other resources that would be required to make society accessible to someone like you.

Within the social model of disability, Autistics are disabled (by a society that does not value Autistics sufficiently to support and accommodate us) but autism is not a disability because disability does not exist, being merely a social construct that makes it convenient for those who would like to disable us without feeling guilty about it.

The Social-Relational Model of Disability

Finally, we have my favorite model of disability, the social-relational model.  The social-relational model is less well-known, having only been developed in the 21st century, by disability theorist Solveig Reindal1. The need for the social-relational model was clear before Reindal wrote about it, though, and I’ve also noticed some people who are unaware of Reindal’s work trying to re-shape the social model into something closer to Reindal’s vision, due to dissatisfaction with the social model. No need to re-shape the social model, though, when the social-relational model already exists.

The major dissatisfaction activists and theorists were finding with the social model was that disabled people could not express any dissatisfaction with the experience of being disabled without being viewed as “traitors to the theory.”2. Reindal’s new formulation of the social-relational model moves to a third position in which society is still held accountable for disabling people but theory does not ignore the body or the real struggles some people have with disability, independent of society’s support and accommodations or lack thereof.

While the social model claimed that disability does not exist, being purely a social construct evolving out of views of those constructed as disabled as being “lesser” in some way, Reindal acknowledged that those who are identified as disabled do, indeed, have some type of impairment. These impairments – what the medical model calls “disability” – Reindal labeled as “barriers to doing.”  In contrast to impairment, Reindal writes about “being disabled” as it is defined by the social model as the “barrier to being,” suggesting that the social constructs that view those with impairments as lesser beings, not worthy of inclusion or accommodation, creates an existential crisis that extends deeply into the disabled person’s core being. 

Within the social-relational model, I have impairments (although not all Autistics have social-relational impairments, according to what others have told me) and I am disabled by society’s lack of support and accommodation for my needs. I have a disability and I am disabled. I have barriers to doing, which I find frustrating, and I have barriers to being, which I find devastating.

Why Is All This Important?

If you have read this far, you may be asking yourself why any of this matters. As an old friend used to say, “how will this help me shop for groceries?”

This is important because these are not just words and theories. This is important because these different frameworks for viewing people’s lives are the structures that underlie how we are treated, what assistance we get or do not get, even whether people feel we have sufficient humanity and “quality of life” to deserve to continue living. It is very important to understand these seemingly academic topics, because these sorts of thoughts are beneath the doctors’ attempts to deny Mel Baggs a feeding tube to keep Mel alive. These thoughts are behind the choice of those administering the transplant registries to deny Paul Corby a spot on the heart transplant list.

These questions and ideas and words are not just exercises in navel-gazing. They are the basis upon which life-or-death decisions are made about us. Too often these decisions are made without us, because the operating definition of disability/disabled is one that places us in an infantilized position where we are not considered able even to advocate for ourselves3.

When I turned to my Facebook friends and asked how they felt about the question of whether autism is a disability or not, I got an overwhelming flood of responses — there were over 200 responses to the question. That discussion really helped me in shaping my thoughts about the rather distressing day I had on Twitter and the nature of disability/being disabled.

Two comments in particular resonated very strongly with me. I found them both thought-provoking and comforting after all the Twitter distress.

Cas Faulds said: “our current society and our current systems means that we are disabled and if we’re working under the impression that we aren’t, we’re setting ourselves up for failure.”

That’s very important. Denying that we are disabled (which I see a lot of Autistics doing these days) runs the risk of setting ourselves up for failure when we decide that there is no real difference between Autistic and non-autistic. This opens the door for the struggle I’ve faced most of my life, believing I kept failing because I just wasn’t trying hard enough. Understanding that I am disabled has helped me to forgive myself for those very real things I just can’t do — whether due to inherent impairment or being disabled by society.

No matter how “disabled” is philosophically constructed, I am definitely disabled and acknowledging that fact gives me the space to re-frame situations and figure out accommodations, whether self-accommodations or accommodations I request from others.

My friend, Chris,  said: “there’s an immense spectrum, from not disabling to severely disabling, and someone pretending their end is the only one that should be called “autism” — well that’s pinging ME really hard as supremacism.”

Yes! The people who kept telling me that autism is not a disability and Autistics are not disabled said that I would hurt the image of autism by insisting that it is a disability or that Autistics are disabled. I felt very excluded and erased because I am quite disabled.

When the discussion was framed in terms of division and supremacism, the first thing I thought of was Michael John Carley’s distress about dropping Asperger’s from the DSM because he didn’t want to be mistaken for someone with more challenges.

The people on Twitter might be right. It might just be a matter of opinion. It might be that autism is not a disability (“but you can call yourself disabled if you want to.”) It might be that we should just all “agree to disagree.”

But I think we should tread carefully on declaring that autism is not a disability when there are so many of us who are so very clearly disabled., regardless of which model of disability one chooses. I know that I would rather be mistaken for “somebody who might have to wear adult diapers and maybe a head-restraining device” (to quote Carley) than throw my Autistic siblings under a philosophical bus because my support needs are different from theirs.

So….my stance? Autism is a disability. Autistics are disabled. Society needs to work harder to support and accommodate us all, in all our variety, with all our different types and levels of support needs. We are human beings, expressing part of the infinite diversity humans express in infinite combinations. Accept us. Support us. Value us. The fact that we are disabled only means that society needs to think more carefully and work more diligently to craft an accessible world we all can live in, together.


1. Reindal, Solveig Magnus. 2008. “A Social Relational Model of Disability: A Theoretical Framework for Special Needs Education?” European Journal of Special Needs Education 23 (2): 135-46.

2. Shakespeare, Tom, and Nicholas Watson. 2002. “The Social Model of Disability: An Outdated Ideology?” Research in Social Science and Disability 2: 9-28.
and
Thomas, Pam, Lorraine Gradwell, and Natalie Markham. 1997. “Defining Impairment within the Social Model of Disability.” Coalition Magazine July.

3. This is why many people dislike my stance on not calling activists “self-advocates.” They have fought hard for the right to self-advocate and do not want that label taken from them. I do not want it taken from them, either. When I am advocating for myself, I am most definitely a self-advocate and I have often been in situations where I was not permitted the basic human right of self-advocacy. My complaint is with using “self-advocate” as a euphemism for “activist.” When Mel Baggs insisted on a feeding tube, Mel was self advocating. When hundreds of other Autistics and allies phoned and wrote to the hospital, demanding Mel’s wishes be respected, they were not self-advocates; they were activists and advocates.

Don’t Call Me a Self-Advocate

This is a re-blog of a post originally made on February 11, 2013.


a boy and his cat

[image description: a black and white photo of a transmasculine person snuggled in his sleeping bag on a cold morning, interacting with his cat who is also snuggled against the chill. Photo copyright 2016 Sparrow R. Jones]

I don’t self-identify as a self-advocate.

Oh, I am a self-advocate in that I seek to fill my needs and (most of the time) am able to ask others to help me get what I need. I am a self-advocate in the sense that is usually meant when goals are set for an Autistic that include the goal of helping the Autistic person learn to navigate systems, ask for what they need, explain their autism to others, and so forth. There is nothing wrong with self-advocacy and I strive to be a self-advocate and to encourage others to do the same.

But self-advocate is not my self-identity. I am an advocate. I am an activist. And so are most of the Autistics I notice being called — or calling themselves — self-advocates.

I’m not writing to try to tell others how to self-identify. I believe everyone should have the autonomy to self-identify as they see best and the rest of us owe them the respect of calling them what they have identified themselves to be. It is a cornerstone of human dignity to be able to say, “I am this,” and have others respect you as such. I will cheerfully call anyone a self-advocate who chooses to identify as a self-advocate. And I don’t judge or seek to diminish those who choose that identity to describe the outreach they do. It’s just that it’s not my identity.

I do think I understand how this term came to be so widely used. Our allistic (not autistic) allies were advocating for us (the best ones were doing so by doing what Kassiane calls “signal boosting”— that is, repeating our message for those who will only hear the words if they come from someone of a different neurotype) and so they came to be called “advocates.” Someone noticed that Autistic people were advocating as well and they decided there should be a special word so people knew that the words (or art, or music, or performance) were coming from an Autistic person themselves. Digging into the pre-existing autism terms, they came up with self-advocate and ran with it.

The problem is the term is dismissive. It is demeaning. It is en-small-ing. It is infantilizing. And it is wrong — we are advocates, not self-advocates, when we do and say the things we do and say to try to make the world a better place for all Autistics. That’s the key there: all Autistics. We are not self-advocating; we are advocating for our entire tribe.

It shouldn’t even feel natural to call us self-advocates when we come forth to speak and write about how Autistics are treated, what Autistics need, what Autistics deserve. I ask you this: do all of these sentences sound natural and right to you?

  • The Reverend Dr. Martin Luther King Jr. was an important African-American self-advocate.
  • When Rosa Parks refused to sit at the back of the bus, she was engaging in a bold act of self-advocacy.
  • During Vietnam, Buddhist monks became self-advocates by setting themselves on fire.
  • The SDS was a student-run organization of political self-advocates.
  • The National Organization of Women regularly engages in self-advocacy surrounding issues of importance to women.

Do you begin to sense why I have issues with the term “self-advocate?”

When I started Googling to see if I could find other Autistics who were not pleased with the label “self-advocate,” I was not surprised to see that I am not the first person to take issue with this label. The first page I found belongs to Corina Lynn Becker, who writes, “In my opinion, self-advocacy is asking for a glass of water. This is not what I do. I am not asking for my human rights; I am demanding them, not only for myself, but for the rest of my community.”

When we are called self-advocates, it is easy to ignore what we say about the current generation of children who are growing up Autistic. “oh, she says some very important, provocative things! But my child is different. My child will never speak or drive a car or get married. She is not talking about my child; she is a SELF-advocate.”

No, we adult Autistic advocate are not like your child. We are not like your child because we are not children; we are adults! You cannot automatically tell what our childhoods were like by just looking at us or hearing us or reading our writing. Calling us self-advocates is the easiest way to disregard something you don’t even know.

When we are called self-advocates, it underlines the myth that we have no empathy by positing us as activists who are only advocating for ourselves. Because how could an Autistic advocate for other Autistics? Without empathy, we must only care about our own personal situation, and especially not the lot of those we will never meet. (That, in case you didn’t realize, was sarcasm.)

Sure, I write about myself. I write about myself a lot. But my stories are offered up as case studies, as examples. I advocate more for other Autistics than I do for myself. When I first re-opened this blog, I wasn’t sure what my focus was. Over time, my focus has become very clear to me and it is to do whatever I can to protect the children and to help them grow up strong and free with happier childhoods than I was able to have and healthier adulthoods than I have ended up with. I don’t write to change my world. I doubt that much of what I write can change my world. My chance has come and gone; I write to change the children’s world and to do what I can to build a better future for autism and for the Autistic. This is not self-advocacy. This is activism.

Another Autistic I found writing against the idea of being called a self-advocate when one is actually reaching out in advocacy for all Autistics is Neurodivergent K. She writes: “Allistic, enabled people are considered the default for anything and everything, so when someone like me-autistic, disabled-does something on my own behalf like every other adult in the world it’s seen as so damn special and cutesy that they decide they need another word for it. A word, I may add, that implies that what I have to say is not as important as what “real” advocates have to say. I’m just talking about myself, you see. They’re doing the really real work, for we need the great allistic savior! We’re cast as sidekicks in our own movement.”

K suggests that it is the allistic advocates who need the special term, not us Autistics. She says they can be allies or parent-advocates while we take back the word “advocate” for ourselves. I agree with her. Or just call us all advocates, for that matter, because why does there even need to be a separation? If we are all doing battle to improve conditions for Autistics (and have no doubt that if we improve the world for us, it will improve for everyone. This is how it has always gone in the past when an oppressed group finally won the fight to be viewed as fully human beings) then we don’t even need an “us vs. them.” We are all advocates. We are all activists. We are all struggling to be part of the solution.

 


Important conversation on this topic moved from the old blog:

Posted by chavisory on February 11, 2013 at 10:36 am 

I’ve always been uneasy with the term and couldn’t really put my finger on why…this post captures some of it. There’s an implied condescension…indeed, like we aren’t the “real” advocates. And it creates an illusion wherein a lot of parents can think “My child can’t self-advocate because she can’t write like these people can, so these autistics are a fundamentally different group of people who have nothing to do with my child’s needs and I don’t have to listen to them.”

And also I agree that I’m not primarily advocating for myself–I have an education, I have control over my own life, I’ve more or less successfully carved a little niche in the world for myself–I’m standing up for other autistic and neurodivergent people to be treated with respect and acceptance, and for other children today to be thought of as capable and having rights and as being future adults and not eternal children.

What I think of as “self-advocacy,” when I was a kid was just called “standing up for yourself.” Funnily enough, no one liked it when I did it back then, either.

Posted by Zr on February 12, 2013 at 10:20 am  

Apparently,
Autistic people are “self advocates”, Neurotypical people are “advocates”.
Autistic people have “special interests”, Neurotypical people have “interests”.
Autistic people have “special needs”, Neurotypical people have “needs”.
Autistic people have “splinter skills”, Neurotypical people have “skills”.
Regardless if it’s the same thing(s) in both cases.
Madness.

 

What It Felt Like When My Words Went Viral (Without Me)

bookcat

[image description: Fermat the Wonder Cat imitates the High Priestess card of the Tarot by gazing thoughtfully into the distance atop a stack of books. Photo copyright 2016, Sparrow R. Jones]


I had always secretly hoped that one day my words would go viral online. What can I say? I’m a writer and I work hard at my craft. When I see that an article I’ve written has thousands of views, I smile. A couple of times, I’ve broken a hundred thousand views and I felt an adrenaline rush as I watched the numbers rapidly rising over the course of a few days.

But now something I’ve written has actually gone genuinely viral and it was so upsetting I didn’t get out of bed for two days.

What? (I’m imagining you’re saying that as you read this) I thought you wanted your words to go viral? Why are you so upset?

Yeah…see…every time I thought about my words going viral or watched my numbers rise higher than they had before, those were my carefully crafted words that I had composed and published intentionally, with my name on them, wanting the world to read them and pass them around as much as possible.

But my words went viral in November without me. They left without my permission and without my name. They were not my carefully crafted words, meant for the world to see and ponder, reflect on and discuss, grow inspired by and feel moved to take action as a result of reading. They were angry words dashed out with little heed for grammar, spelling, gravitas or the carefully balanced triad of ethos, pathos and logos I strive for in my formal work.

An angry note I shot at a family member in the middle of a heated argument over the outcome of the presidential election — a note filled with all the adrenaline and rage of decades of family skeletons tumbling out of the closet into a clattering heap of bones on the floor at our feet — was what ended up all over Facebook, Tumblr, Reddit, the XKCD reader forum, YouTube video descriptions, meme graphic generation sites…..everywhere.

I am conflicted about my name having been removed. They were words never intended for the larger world and they were words of anger, a tormented howl of anguish. But they were mine. I reject them and I mourn my name being stripped from them. They were not my carefully crafted, painstakingly polished words, but the power they carry comes from years of work and practice, writing thousands of words every day, honing my craft, finding my voice. They were angry pencil jabs ripping through the paper, but they were mine and carried fruits of all my years of efforts off into the void where several other people grabbed hold of them and put their names on them. As much as it hurt seeing my words running around without me, it made me want to hurt someone else, seeing my words with a stranger’s byline.

I tracked down one of the strangers. She was hateful and admitted she had put her name on someone else’s words and suggested I sue her before blocking me. In attempting to track down another stranger, I encountered someone who had shared the words who I ended up blocking because she kept insisting I seek therapy. I’ll be the first to admit I’m pretty unbalanced these days, but I was not looking for life advice, just playing detective on how the words spread.

In part, I wanted to find the plagiarists who were so bold as to claim someone else’s words as their own and I wanted to ask them to explain the reasoning behind their choice. (As if I were expecting reason and logic from Thought Thieves?)  But in larger part I ached to know how my words ran away from me like that. How did a family argument that ended up with most of my family blocked on Facebook and the rest painful to even think about, let alone consider interacting with ever again … how did that turn into a run-away viral meme?

I will never know. Part of healing from the experience was admitting that I would never know and being willing to consciously let it all go, bid my words farewell, know that there are more words — there will always be more words — and focus on continuing on my journey, leaving my misbegotten words to work whatever dharma they might be working.

“You should turn those words into a op-ed piece and present it to the Washington Post and The New York Times, etc. Don’t worry about the Facebook crap. Take your words to a larger audience,” a stranger told me when I was struggling to track down who and how my words had gotten away from me. “Fight back. Get it published in a newspaper where millions will read them. Your words have power. You can use them to affect many readers. I was impressed by what you wrote and I don’t impress easily. Your words struck a deep chord in everyone who read it.”

Yes….I understand. That’s why words go viral in the first place. They touch a nerve in others.

I had really hoped that I could develop enough skill as a writer to do that intentionally.

I have beaten myself up over this, bitterly suggesting to myself that I should only write after getting myself really riled up first. If it takes being flooded with adrenaline to produce writing that people love enough to steal, maybe I should just live in an out of control emotional frenzy so I can create more words that will move so many people so deeply.

But that’s an painfully angry non-solution and I know it. Spending so much of my time in such a worked-up state would send me to jail, the madhouse, an early grave — possibly all of the above, each in turn.

I feel isolated. Not only was my name removed from my words — something that feels like having my identity stripped away, strange though that comparison might sound to others — but I feel like no one else on the face of the Earth understands why it affected me so deeply that I took to my bed for two days to recover. I feel completely alien and frequently foolish as I listen to others attempt to mirror my pain back at me only to reveal that they have utterly failed to understand why this event has struck such a blow that I sank into a pit of despair and (temporary) loss of creativity.

I am proud of my words. I am ashamed of my words. I am angry that strangers are claiming credit for my words. I am relieved that I am not being passed around the internet as “that angry person” or worse. More people have found my words moving than I’ve ever experienced before and I feel more isolated from the human species than ever before.

And that is what it felt like (and in painful moments, still feels like) when my words went viral without me.

I Want You To Be Happy

cat toes

[image description: a black and white tuxedo cat lounges sleepily in the sun on a plywood table inside a minivan, with bright blue sky visible out the window. The cat is viewed from below so all the viewer can see is his little face and his legs sprawled out into space, darling little toe pads at the end of his soft feet. Photograph copyright 2016 Sparrow R. Jones]


I want you to be happy.

You have been weighed down for too long with cares and concerns. Your body has been heavy with worries for the future and your heart races with fear. You feel like you are clinging to a cliff and your fingernails will give way any moment. You just can’t see how anything will end well.

I’ve been there. And I’m not talking about the distant past. It’s a cold, dark pond I go wading in on a regular basis, this murky fear and muddled worry. The things that weigh my limbs down, paralyzing me with fear, might be different from the things you are being dragged under by, but we both know that pond pretty well, right?

But I want you to be happy. I want us both to be happy. I want all of us to be happy. That’s part of why I’m still here, treading water. I know I can help if I can just keep my own head above the surface long enough. I know I can help you be happy. And if I succeed, I know it will help me to be happy, too.

But what is this happiness I’m talking about? I see a lot of cynics shooting down the very idea of happiness as some kind of bliss-ninny fantasy completely divorced from reality. “I don’t go around grinning all the time. Happiness is a lie,” they say. “Being pleased with my work is the best thing I could hope for. I hate the word happy because it’s just an illusion to dangle in front of people to try to control them.” “Happy? That’s some future that will never come. Don’t talk to me about happiness.”

It took me a long time, myself, to understand what I mean when I say happy. I haven’t had a lot of happiness in my life, so even understanding what it is has been a challenge for me. I was born into a family that had already established a long history of abuse before I ever hit the scene. I was hit, insulted, set up, molested, kicked, and hit some more. I was blamed for everything that went wrong in my life, including those things other people chose to do to me. Less than a decade into life, I watched my brother lose his battle with cancer. Many more years of sexual and physical abuse followed me out of the family home and years of homelessness were capped by watching my daughter die the day she was born. By that point, life had been so hard for so long that I wondered if she weren’t the luckiest one of us all, getting to take a pass from the mire we all work so hard not to drown in.

Life is still hard for me. I am houseless — I would call it homeless, but I made a conscious decision to live in my minivan and I prefer to save the word ‘homeless’ for those who didn’t ask for the burden and are treading water harder than most of the rest of us because they ended up in such dire straits. I am poor, but I am slowly building income from my work and hope some day to be completely self-supporting. In the meantime, I am so grateful for the SSI benefits that keep me alive and above the waterline. I am lonely, but again that is by choice. I wanted to be able to travel around to try to spread a message of love and autism acceptance far and wide. Loneliness is just part of the ticket cost of this glorious ride.

But I am beginning to see happiness and just starting to understand what it’s made of — for me, anyway — and I am learning that it is not some kind of constant overwhelming joy or even a huge grin. It’s something deeper and more solid than ephemeral emotions that drift across the surface of my being like stormy waves or sunny seas. When I talk about happiness, I’m talking about something deeper than being pleased at a pretty birthday cake or excited to see a loved one again. I’ve come to a point where I no longer even think of happiness as an emotion.

When I was seventeen, I landed in a mental hospital for a time. While I was there, a family friend gave me two books to try to help me sort things out. One was a Thomas Merton book and it was interesting and soothing. But the other, an Alan Watts book, went straight to my bones. Since that time, I return to Alan Watts regularly. He barely had his own life together at all — many would say he didn’t have his life together whatsoever. He was a lifelong alcoholic who died at the relatively young age of 58, most likely from a heart condition and the complications of alcoholic excess.

Alan Watts is what Jungian thought calls a wounded healer. The ultimate wounded healer in mythology was Chiron, the centaur who received a fatal wound from a poisoned arrow but, being immortal, could not die. Instead, he suffered tremendously and, unable to heal himself, gave up his immortality and died. Zeus could not allow such a healing teacher to pass away from the world entirely and so promised that as long as Chiron’s wisdom is needed, his teaching will live on.

Alan Watts is a Chiron for me. I was only six years old when Watts died, but he left behind words that still teach me about life. Listen to what Watts says about happiness:

I have found happiness in vocation. Watts talks about finding that thing that is yours to do, “because you would do that thing whether it paid you very much or whether it didn’t. Because that’s the one thing you have to do.”

For me, happiness is not about smiles or laughter or excitement. Happiness is about having finally found the place I am supposed to be and the thing I am supposed to do — the thing I could not stop doing. As Watts says, “I am a writer; I have to write, whether it makes me money or whether it doesn’t, I would still have to be a writer.” Happiness comes from doing what one is shaped to do and could not do otherwise. Happiness comes from being that which is inevitable.

I see this in some of the parents I know. They are very clearly living their dharma by growing strong children into adults who do not doubt their inalienable right to exist and thrive, to love and be loved. Although the bills weigh heavily and the future looms and they are not sure how their child will continue to live and eat when they have shuffled off this mortal coil, they are living their dharma and they are happy. They are focused and they are doing exactly what is theirs to do.

The Autistic Happiness Project is not about birthday parties with ponies and balloons. It is about this happiness of dharma — the happiness that comes when every Autistic feels to their core that they are where they should be. That means the Autistic Happiness Project is as well-suited for fighting depression, abuse, and injustice as it is for celebrating the beauty of infinite human diversity in infinite combinations.

I want you to be happy. I want you to feel your immeasurable worth. I want your feet to be firmly rooted in the unshakeable confidence of your place in this world. I want you to find your dharma and become so immersed in it that hours pass like minutes.

Does happiness mean you will never again feel the cold water closing around you? No, because finding your place in the world does not make the world go away. But a deeply-rooted happiness will remind you why you keep treading water. A strong and solid happiness will feed your will to keep swimming, even when it seems the shore is receding. This is what my happiness gives to me: a determination to keep dog paddling through the darkness because I need to continue doing that thing I am shaped to do. My dharma awaits on the shore and that keeps my head up and my limbs moving. That is what happiness means to me.

I want you to be happy.

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