Leo in Bloom Magazine

Nick: Not so much a lion’s tale, but the tail that peeks out as a telltale giveaway, even when I’m trying bravely to disguise my fears. (E.g., remember how Bert Lahr’s Cowardly Lion in the Wizard of Oz movie uses his tail like a security blanket, and how it won’t stay put under the Cossack coat he wears to infiltrate the Winkie Guards of the Wicked Witch of the West to rescue Dorothy.) Every day I am distracted by the noise of anxiety and sometimes the resulting, snarling cognitive distortions in my mind that kidnap my truest self and tempt me to be a cowardly liar about who I am when I listen to their mantras of untruths. 

Fear doesn’t mean we lack courage; in both the movie and the book, the Wizard helps the Lion recognize his innate bravery. Yet I think our vulnerabilities–how we signal them (in our tail-less ways), and how we handle them (even if we need security or regulation objects, occasional disguises, or medal-of-commendation equivalents to bolster our confidence)–are important to acknowledge and delve into a bit. So many of us on the spectrum experience high levels of anxiety, which not only wreak havoc on our bodies and nervous systems, but also affect our thinking. Regulation is not merely a physical thing, although calming and slowing down our bodies can act on what is happening in our minds. There’s a mind-body connection, and we mustn’t ignore how fears and anxiety act on both.

Do you feel comfortable sharing with our readers some of the ways we are Cowardly Leos: things we fear or what triggers us, what this does to our thinking, how we handle this, and perhaps even ways in which we might be braver than we think?

Danny: I love this, Nick! I am so governed by anxieties. I think many people are. But as you note, when one can’t control one’s body, that anxiety manifests more obviously and in more unruly ways. For me, even a passing pang of anxiety can flare up into loud stimming and agitated movements. It is frustrating at times. 

But I am convinced that we are among the most brave people in the world. We struggle with so much, we are made fun of or forgotten, we are misunderstood and mistreated. Just doing basic tasks is overwhelming to our bodies. Yet we fight on. We persist. Many of us – all the spellers I know – still have love and compassion for humanity. That is brave. 

I think that we are much stronger and more resilient than people can ever fully realize if they have never experienced what we go through. I am proud of that. I might look like I am struggling from the outside, but what people can’t see is how much I am very capably doing internally to cope with this disability and the way society treats me. 

How do you feel about your own relationship to fear and bravery? 

Nick: I like what you say about internally coping, but perhaps I don’t feel as capable as you about the struggle I have inside. I’ve gotten better at addressing my former tendency to turn mistreatment, misunderstanding, and stereotypes from others into internalized oppression (which I wrote about in 2010: https://dsq-sds.org/index.php/dsq/article/view/1054/1241), yet I still translate (far too often!) anxiety, stress, sensory overload, tiredness, and fatigue into a mental struggle involving cognitive distortions. I’d like to be able to leave what, so often, is physical in origin–my nervous system knocked out of whack–in the realm of my body. Instead, while my body for the most part enacts flight, my mind engages in fight, with myself and others. 

Although I embrace aspects of my autism, I wish I wasn’t trapped in a body that can’t do as much as most toddlers. I have love and compassion for humanity, as well as appreciation for people who have tried to help me. Yes, some have and do hurt me, but I work hard to understand and forgive or ignore them. I yearn for independence, I long for greater connection with others, including romance. This all may happen one day but everything seems to develop at the pace of a century plant coming to bloom. I worry about the time my stepmom is too old to assist me, and I fear the heart-stopping day she dies. I am afraid that (like many of my friends) I will end up living in a situation in which communication is not available all the time, is not fluent, is infrequent, or is not there at all. A gaping maw opens to swallow the spark of me at the thought of this, since I fear I would spin into chaos and depression if this happened, rather than hold steady my unspoken flame within. Fortunately I have support to address my frustrations and fears, to analyze, to relax, to develop healing and coping strategies, to make plans and take action. I work to be patient, to be positive, to keep myself together, and when my body is in balance I feel strong and can do this.

However, when my vagal state is knocked out from under me, my stress hormones soar and with the speed of obsession I become bullying, loutish, or abusive in order to feel powerful while my mind justifies my mean, unfair behavior by goading anyone around me toward confrontation, hoping to feel superior if I can bring them down to my level. If (or generally when) this doesn’t work, my mind chants a mantra about going insane, and I push my stress behaviors to escalate. Sometimes my anger is more passive aggressive, and I just try to get high on adrenaline or cortisol or whatever the natural chemical is that takes me up the wall of sheer excitement in crazed abandon as if to hurl myself from a cliff. I lose sight of myself and want to spiral beyond the painful stress that speeds my nerves, body, and mind. If this has not been nipped in the bud or surges suddenly, then calming tactics are too late and it is like the me I really am is not there, only the bully or lout, fed on the repetitive lies in my head. At times, for hours or days (once in a while, even weeks) I seek out stress chemicals like an addict, and my days with my stepmom or staff are spent trying to find calm along the narrow thread of a frayed nerve.

During all of this, I’m not really thinking about the things I fear. Most often my amygdalic trigger is not related directly to fear at all. It’s a matter of something like sensory overload, a barometric change, or extreme tiredness. Still, my sympathetic nervous system is moving too fast to distinguish reasons for fight and flight, so I think real fears get sucked into the morass of my cognitive distortions. Fears are not the cause of the mire, but they become the mode. My stepmom jumps in when my anxiety behaviors start: “Is there anything to flee? Anything to fight?” Sometimes this is enough to sidestep the bog.

But the lion . . . I’ve lost hold of his tail. Maybe you can lead us back with your own tale of fear and courage?

Danny: I totally lose it and feel swept up in panic and mania. At times, I feel like a monster. The real me remains trapped and helpless amidst it all. It is such impotence to watch my body do things that I don’t want it to do, like shouting and stomping and basically bullying my family. I fear these episodes. So I am doubly afraid, of whatever triggers my initial anxiety, and of what I will do with that anxiety. 

All I can do is manage my spiraling before it goes too far. It is a lot of work! But it is so helpful to consider the fears I can control more. I am able to significantly reduce my panic if I can depend on being able to break the chain of sleepless manic nights. For me, that is a prescription for low dose, as-needed Xanax. I am wary of medications like that, but I needed something to help me calm down enough to sleep. It helps me immensely and I almost never need to take it, because just knowing I have access to it reassures me and helps stop the spiral. [Note: I am in no way recommending this to anyone else – this is something that was prescribed to me after discussion with my doctor!]

I am also now delving into my raw feelings over being disabled. I am so feeling liberated by the process, but it takes courage. I am afraid of fully acknowledging the force of the pain and anger I feel at my disability. I am afraid to face the truth so brutally. Yet diving in gives me courage. 

Do you have thoughts on this? 

Nick: Your words speak to my experience: “I . . .  feel swept up in panic and mania. . . . I feel like a monster. The real me remains trapped and helpless amidst it all.” I, too, wear at the nerves of those around me, and sometimes I become psychologically and physically aggressive and abusive toward the people who love me and are trying to help when I listen to the ugly, lying narratives in my mind that desperately try to justify the Mr. Hyde my body becomes.

I don’t want to be a monster. In trying to calm myself and goad my cerebrum to prevent my amygdala from opening the door to distorted thinking, lately I’d been imagining an Alternative Universe Version of Me (a married English professor with children); I would talk to my wound up body and mean thoughts as if they were my kids. As the sensible father, I would try to talk down the high emotions of the toddler’s helpless frustration and angry tantrum, the Daffy Duck flip-out of the over-excited and tired pre-teen, the disrespectful lout or jerk behavior of the defiant teenager. This worked if I was not too far gone myself, but for too long I have identified myself with these characteristics of thinking, so it is difficult to separate them in my mind as “characters” who are not part of the adult me.

Since we began our “Leos Roar” conversation, however, I’ve been watching Dog Whisperer with Cesar Millan, first because I like animal shows and eventually because I was learning something about sympathetic and vagal nervous system states by watching the dogs and seeing physical manifestations in a clearer way than I can with humans. Excited or fearful dogs are all fight or flight (sympathetic system), with no subtlety. Their bodies very visibly (and aurally) are possessed in a way similar to ours, “trapped and helpless amidst it all.” It is obvious that they are uncomfortable and unhappy in this state. They don’t feel safe. When Cesar (and members of the dogs’ human “pack”) act as pack leaders and snap them out of their mania with a “ssst” and firm but calm guidance toward a relaxed state (vagal system), the dogs are happier and learn fairly quickly the boundaries and rules that will subdue the escalation of out-of-control behavior.*

Rather than search an alternative universe for the Father Me, my current metaphor is the actual Mature Me in the role of Pack Leader of my excitable and fearful, whining, yapping, growling, jumping at, and snapping nervous system reactions. I can try to distract my pack from the stuck place in their “red zone” mania, “ssst,” and help them subdue themselves into a calm state. I am realizing that I don’t need to whip up excitement and anxiety as a means to wake up my body with adrenaline and cortisol, similar to how Cesar trains human pack leaders not to wind up and excite the nervous systems of their dogs when they’re going for a walk or when someone enters the door. It’s okay for my body to be like a sleepy dog. Actually, I think I’m more focused when I’m tired than when I’m stressed. I’m starting to recognize my anxiety triggers and create new habits to diffuse or avoid them. 

My approach is still in the experimental stage. I’ve had a little over five days in a row so far of having a mostly calm body, after weeks of aggressive anxiety that exploded in me and at those around me as if we were all crossing a minefield. I’m realizing that I am happier in a state of sustained calm, that although I enjoy the drama of intense feelings it is taking its toll on me (stress may have raised my liver enzyme levels). By taking the responsibility of thinking of myself as Pack Leader, I shift my mind away from the cognitive-distortion mantra that “says” others are trying to have control over me when I place them in the position of calming me. (Instead, I allow people to prompt me by asking if the Pack Leader is needed.) I might not have to be so afraid of my own Monster Self if I can de-escalate his roar into a purr or, better yet, nip his yip in the bud.

Could we talk a little more about insights we might gain in facing the “raw feelings . . . pain and anger [we] feel at [our] disability”? You are right about locating courage in grappling with this truth. I believe our conversation is headed toward the liberation you describe of “diving” into the process.

Well, we didn’t get to wrap this up, but this might come up in future conversations! We hope you enjoyed this issue’s Roar.

*Disclaimer: I don’t know how Millan’s methods are viewed by animal rights activists. I am not promoting them, and in no way am I saying any person should be treated like a dog. Millan merely showed me how the nervous system can get stuck in a stressful mode and how judgment-free awareness of this state and calming can reset the body. The image of being my own Pack Leader works for me because I have tended to make other people authority figures, instead of myself. Furthermore, by depersonalizing my cognitive distortions as members of my pack, I can better think of them as physical expressions of my nervous system’s state, rather than characters having arguments with my mind.