Sunday, July 29, 2018

The Protective Gift of Meltdowns

Maxfield Sparrow

Photo © 2017, Maxfield Sparrow
[image description: a turtle in the middle of the road on a hot, sunny day.
His skin is dark with bright yellow stripes and his shell is ornate,
covered with swirls of dark brown against a honey-yellow background.
The turtle is rushing to get across the street and his back leg
is extended from the speed and force of his dash toward freedom.]
I hate meltdowns. I hate the way they take over my entire body. I hate the sick way I feel during a meltdown and I hate the long recovery time—sometimes minutes, but just as often entire days—afterward, when everything is too intense, and I am overwhelmed and exhausted and have to put my life on hold while I recover.

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

Meltdowns, Like Shutdowns, Are Harmful But Necessary

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

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

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

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

Meltdowns are alarm systems to protect our brains.

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

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

When a person doesn’t themselves experience the hell of having a meltdown, that person can easily misunderstand and misjudge what it actually happening.

Meltdowns Are A Normal Response To Sensitivities

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

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

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

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

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

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

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

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

Normal Human Variation Includes Variant Emotional Sensitivity Levels

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

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

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

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

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

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

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

Meltdowns Protect Us From Harmful Situations and People

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

What I wrote a year ago:
"If I have lots of shouting, freak-out, PTSD meltdowns when we spend time alone with each other, yes it’s an Autistic thing. But it also means you’re regularly doing something messed up. 
"An isolated meltdown could just be a random convergence of awful that has nothing to do with you, but if a pattern develops, you’re probably gaslighting me, mistreating me, abusing me, or generally taking nastily unfair advantage of that same Autistic neurology that makes me unable to recognize I’m being abused or mistreated until I see the pattern of meltdowns. 
"All my life I’ve been told, and believed, that losing my shit was a personal shortcoming I should work to overcome. 
"I now realize it’s actually my body/brain’s alarm system letting me know something’s seriously wrong in my life. Something bad that needs to be fixed, like yesterday, if not sooner. 
"I finally realized all this today. Everything suddenly connected. 
"And in an instant, I no longer hate my meltdowns. I think I might actually love them. They protect me.
So… I still do hate meltdowns. More specifically, I hate having meltdowns. They are hard on me, physically and emotionally. They are embarrassing, messy, frightening.

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

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

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

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

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

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

Thursday, July 26, 2018

#AutisticWhileBlack: Diezel Braxton And Becoming Indistinguishable From One's Peers

Kerima Çevik

The author's idea of what displaying autism positivity looks like
[Image: a Black woman over 50 with braided gray hair wearing
Neurodiversity 3.0 by ThinkGeek, a black T-shirt with a world globe
 design on the upper chest area in the shape of a human brain,
colored in physical map fashion i.e., water is colored light blue
 and land masses green, clouds white, looking to her left
 over bent wire-rimmed glasses in that way that mothers look at
 their children when an outrageous behavior has just ensued.]
There is an article in a paper called The Daily Net, about singer Toni Braxton's 16-year-old son Diezel working as a professional model for the past two years. The article refers to him as "formerly autistic." It goes on to say he has, "fortunately, moved past" autism and is now a celebrity himself.

Apparently, when her son was thirteen, Ms. Braxton was told he no longer met the criteria for autism. According to the article, she goes on to say:

“I am one of the lucky parents. Early diagnosis changes everything. I will tell you this. I will shout it from the rooftops. My son Diezel is off the spectrum. Off the spectrum being autistic.”

I beg to differ. There is no cure for autism.

Autism is a neurological divergence that doesn't just go away. One doesn't "move past" the wiring of a brain that has obvious neurological and physical differences. Calling current interventions for autism "treatments" is a misnomer that confuses parents. These interventions do not cure autism. They suppress visible signs of neurodivergent minds, forcing a type of behavioral code-switching that allows an autistic person to appear to navigate the world around them, such that they blend in with nonautistic peers.

This is not a cure. The price paid when forced training in compliance and the suppression of coping mechanisms is pursued—instead of investigating and addressing the root causes of coping mechanisms and misunderstood behaviors—may later manifest later in "formerly autistic" adults as mental health challenges, and PTSD.

A parental demand that Diezel should not display any sign that he is autistic has been issued for public consumption, from a mother who has no understanding of being autistic—except to view her son's brain as an enemy he must fight, and defeat. Is telling your adult son to hate his own brain, and how it works, a good thing? This sounds more like the very definition of how internalized ableism happens.

Toni Braxton would not tell her son that his melanin and hair are abhorrent things that he must combat and chemically suppress so he can be "indistinguishable from his white peers." I wonder why its okay to tell him to hate the nature of his own neurology? Most of the innovations, discoveries, and creative artistry in this world came from neurodivergent minds. Nina Simone was bipolar, as were many other great musicians. Many creative people are autistic. Presumption of a cure when the symptoms of a divergent mind are no longer apparent deprives neurodivergent individuals of their future rights to critical mental health, and other supports they may need to access going forward.

It is truly harmful to hold up an autistic teen and call him "formerly" autistic. If he has trauma, anxiety, or any future issues, his own mother's insistence that his lifelong disability is gone might lead him to hesitate in seeking help, to feel inadequate, to feel unable to request critical accommodations and supports that might significantly improve the quality of his life—or save it.

Diezel is the son of a celebrity, so his life is at this moment might appear significantly better than that of his African American peers. But this path of using an incorrect term for his becoming indistinguishable from his peers is dangerous to our community, and wrong.

Toni Braxton's type of rhetoric, along with parading her teen son around as inspiration porn, could have other parents exerting increased pressure on their own offspring to be "formerly autistic"—and if those young people have a degree of disability that makes becoming indistinguishable from their peers unrealistic, it could irrevocably harm them.

The author's idea of an autism positive autistic male model. 
With permission, and yes, we have matching Neurodiversity 3.0 
t-shirts. He is wearing his, bought deliberately 
large because the collar would disturb him otherwise.
 The photo matters because it defies professional
assessments of his degree of disability.
 He is facing me while I'm photographing him,
 he's looking right at me, and he's sending a
kiss in my direction. 
[Image of a multiracial teen with curly hair
at a table in a black t-shirt with a
drawing of a human brain
colored to look like a physical map of the world
 with the word Neurodiversity in all caps
 and green lettering beneath it.
A refrigerator can be seen in the background as
can parts of a sitting room behind him. © Kerima Cevik]
The crushing element of structural ableism, which breeds internalized ableism when nurtured by this type of parental gaslighting, may have emotional consequences at a later time in Diezel's life, and that truly concerns me. His mother clearly hates the autism label, and views autism in the same way she views the Lupus diagnosis she carries. I wonder how this has informed his identity and his sense of self-worth? I wonder if Diezel has been assessed for conditions like prosopagnosia, synesthesia, or auditory processing disorders? Has he been tested for Ehlers-Danlos Syndrome (EDS)? These common autism traits and co-occurring conditions are rarely tested for, or addressed, in African American autistic populations.

As African Americans, we are forced to code switch, to suppress African American Vernacular English (AAVE) and cultural differences that make us who we are—unless those differences in language and manner have already been culturally appropriated. Ebonics is still deliberately treated as something less than acceptable. It is still a major issue when natural hair is worn to school, or work. It is still a risk when AAVE is used in traditional work settings, or public spaces. The suppression of Black identity that necessitates code-switching to gain employment perpetuates structural racism. This type of racism has been exposed, deconstructed, and understood to be harmful. We now insist on being ourselves, and this has direct positive effects on the acceptance of our own Black identities. This reduces internalized racism and has created an entirely new generation of young Black activists who are able to continue to fight for the basic human rights we deserve as African Americans.

Toni Braxton's celebrity, and her wrongheaded understanding of autism, have been used for years to muddle the African American community's attitudes about autism. She allowed herself to be used to present autistic brains as things to be eradicated, and this is unacceptable. Her attitude sets up a dangerous mentality that is unsustainable, as you cannot eradicate your child's brain.

Braxton has been vocal and public in her portrayal of autism as a disease to be suppressed and defeated, rather than as a lifelong disability, and this has had a devastating impact on how our people view their own autistic children. We have a disproportionate number of autistic high school graduates who could succeed in college with the understanding that supports exist to help them navigate university life on every college campus. Our community views autism as a mark of shame, an embarrassment, and celebrity parents like Ms. Braxton continue to be instrumental in perpetuating these attitudes of ableism that hold multitudes of autistic youth back, when her intention appears to give our people some sort of hope and inspiration.

It is time to make the harm Braxton is causing clear, and speak up for the sake of so many autistic young adults and teens who live with self-loathing in part because of celebrity parents who inadvertently gaslight them with the attitudes that the things that make a young person autistic must be code switched off, suppressed—and who they really are must be either hidden away, or eradicated.

The average life expectancy of an autistic person is 36. I would argue that what makes navigating this world as an autistic person so risky is not just being autistic; it is the way every layer of society bakes ableism into the structure of autistic lives, such that from childhood to adolescence it becomes internalized, and increases risks of harm. We parents have to stop contributing to this cycle of loathing and alienation with misinformation, myths, and false narratives. It's time we understand the impact that our words and actions have on our children, and on the entire autism community.

I can't keep Toni Braxton from misinforming the public about her opinions on autism or her son. I can't keep her from continuing to speak about him without him, although he is now a celebrity in his own right and supposedly capable of speaking for himself. But what I can do is point out what is wrong about her behavior, and the damage it is doing. What we can all do is recognize what Braxton is doing, and not pave the road to autism hell by allowing ourselves to be led by celebrity or personalities. We need to seek peer-reviewed factual knowledge of what autism is, and understand how we can facilitate a better life for our children, by arming them with accurate, empowering facts.