5:17am October 1, 2014

Exposure Anxiety

This is something I didn’t realize how much I had and I really need to reread Donna Williams’s book on it. Last time I was too defensive to read it properly, especially when she recommended Risperdal as treatment, which made me too furious to continue. Not that autistic people shouldn’t take Risperdal if they want to, but she’d been told it was a mild anticonvulsant (it’s not, it lowers the seizure threshold) and Risperdal has the potential for severe short-term and long-term side-effects including a severe worsening of autistic catatonia for anyone who might be experiencing catatonia. And remember, lots of autistic people have catatonia without having autistic catatonia. Catatonia is a set of motor traits that are exceedingly common in autism. Autistic catatonia is a progressive amplification of those traits starting in puberty or young adulthood.

Anyway Donna Williams wrote a rough sketch of what the diagnostic criteria for Exposure Anxiety might look like, and I thought it might be useful for autistic people since many of us are prone to it. This is a long post so it has a tl;dr at the end and a cut after the criteria.

If there were a diagnostic criteria for Exposure Anxiety it might fit the following:

A. Present from birth or infancy and persists throughout the person’s life span.

B. A marked and persistent aversion to directly confrontational attempts by even familiar others to share joint activities, communicate directly or cause self awareness, escalating from aversion to diversion, to retaliation responses. (Note: this could also be present in abused children, those with attachment disorders, and those with information processing disorders, sensory perceptual disorders, sensory hypersensitivities or sensory deficits).

C. Involuntary avoidance, diversion and retaliation responses revolving around basic self help skills and toileting even in the absence of any social audience. May later be accompanied by a tendency to mirror others when they are doing these things (can’t do as oneself) or to attribute responsibility to others or to objects to achieve these things (can’t do for oneself).

D. A social style ranging from self isolation to seemingly aimless wandering to highly active, even sometimes seemingly socially threatening approach-avoidance behaviours.

E. A communication style which may include any range of the following:

Selective Mutism, mindless (even self-hypnotic) singing or self chatter.

Short, telegraphic bursts of speech.

Whispered, self directed, rushed or overly slowed speech to the point of being incomprehensible.

Highly characterised stored utterances or scripts.

Persistently impulsive communications which are offensive or distancing.

Obsessive anxiety-driven descriptive or intellectual litanies. Artistic or typed expression far beyond what the person can express directly or verbally.

Note: Provided these are not better accounted for by Tourette’s tics, Semantic Pragmatic Language Disorder, Aphasias, verbal agnosias, Social-Emotional Agnosia, personality or conduct disorders, Alexithymia or other mood or anxiety disorders.

F. Exposure to uninvited praise and attention provokes immediate avoidance, diversion or retaliation responses. By mid-late childhood these EA responses may have differentiated into strategies of “can’t do ‘as oneself’, 'by oneself’ or '˜for oneself’” in which praise and attention are tolerated when the person has assumed a role or character but not when they are caught off guard or when being themselves.

G. A phase in early childhood where there is no remorse for involuntary avoidance, diversion or retaliation responses but by mid childhood-puberty, self directed rage may result from progressive awareness of their own condition and desire but inability to escape it.

H. Avoidance, diversion and retaliation responses or strategies of “can’t do as self”, “can’t do by self” or “can’t do it for self” significantly interfere with the person’s ability to cope with change, transitions, demonstration of academic learning and skills, ability to function in employment, ability to gain or sustain general friendships, manage healthy parenting or sustain long term intimate or sexual relationships.

G. Involuntary avoidance, diversion and retaliation responses and depersonalisation strategies of “can’t do as self”, “can’t do by self” or “can’t do for self”, are not due to the direct physiological effects of any substance or other general medical condition and are not better accounted for by abuse or by other anxiety, conduct, personality, developmental, attention deficit, dissociative, attachment, mood or compulsive disorders.

She gives a list of disorders to make sure something isn’t. As in, “If it’s this other thing, it may not be EA.” I’d add autistic catatonia to the list, and movement disorders in general. Some links on autistic catatonia, and catatonia in autism even in the absence of progressive catatonia like I have:

Of course any of those things can be made worse by, or even in rare cases entirely caused by, Exposure Anxiety. I had no idea the effect of stress and anxiety on my autistic catatonia until I got adrenal insufficiency, which means an extremely low level of cortisol, a stress hormone. (In my case, it was too low to measure by the time they went looking. I’m lucky to be alive. On steroids for the rest of my life now.) But anyway, minus the ability for cortisol to be pumping through my system all the time, my catatonia became much less severe than it had been. I freeze less, I run around the house aimlessly less, I even rock and do full-body stimming much less. (Most of my stimming is now hand movements. Not that stimming that felt like it was driven by adrenaline.) I still have autistic catatonia but it’s much less severe. Perhaps this is why lorazepam works so well on it. Perhaps not. I don’t know.

These criteria for Exposure Anxiety describe me more than I’d like to admit sometimes. I don’t agree with everything she has to say about Exposure Anxiety. And I worry greatly about people reading her book Exposure Anxiety: The Invisible Cage and using strategies on people who do not have EA, many of which could become abusive or neglectful if misused. Like letting someone sit in a soiled diaper so that eventually they have to learn to do it “as themselves” and not rely on other people helping them and reinforcing EA’s grip over them.

One reason that her poem “Nobody Nowhere” leapt out at me so strongly was because it was a poem about Exposure Anxiety, what she refers to as the invisible prison warder:

In a room without windows, in the company of shadows,
You know they won’t forget you; they’ll take you in.
Emotionally shattered, don’t ask if it mattered;
Don’t let it upset you, just start again.

In a world under glass you can watch the world pass,
and nobody can touch you, you think you are safe.
But the wind can blow cold in the depths of your soul,
where you think nothing can hurt you 'till it’s too late.

Run till you drop; do you know how to stop?
All the people walk right past you, you wave goodbye.
They all merely smiled, for you looked like a child;
Never thought they’d upset you, they saw you cry.

So take advice, don’t question the experts.
Don’t think twice, you just might listen.
Run and hide, to the corners of your mind, alone,
like a nobody nowhere.

For some autistic people, Exposure Anxiety is an enormous part of our autism, and while, again, I don’t agree with all her descriptions, or all her solutions for it, I have to say I identify all too much with the basic idea. When I read that poem, I knew that for the first time in my life I was reading a book with someone like me in it. I vaguely understood that she was autistic, but at that age the word autism meant nothing to me, so I made no connections between myself and the term autism, even though it was being bandied about by my parents and professionals in my life. But reading that poem was like having a bucket of ice water thrown in my face, I felt raw and exposed and like someone had climbed inside my head and knew all my secrets. I had relied for so much of my life on nobody understanding me, as a protective mechanism (“they don’t understand me so they can’t really hurt me”) so reading myself on the pages like that made me feel like my first line of defense against the world had come down.

And then this:

This is a story of two battles, a battle to keep out “the world” and a battle to join it. It tells of the battles within my own world and battle lines, tactics used, and casualties of my private war against others. This is my attempt at a truce, the conditions of which are on my terms. I have, throughout my private war, been a she, a you, a Donna, a me, and finally, an I. All of us will tell it like it was and like it is. If you sense distance, you’re not mistaken; it’s real. Welcome to my world.

Holy crap she knew. She knew. And it made me terrified yet compelled to read on. These were things I’d never seen on the printed page. People like me didn’t exist in books, not as fully formed personalities. And here she was dismantling my every defense against the world without even trying. it was sometimes too much to bear. If there are subtypes of autism, she and I are at minimum in the same broad category. We even entered certain 'autistic developmental stages’ (stages that many autistic people go through but nonautistic people don’t) at the same ages. I’m convinced there’s something to that, something to that that no researcher has ever seen fit to study because they wouldn’t even recognize an autistic developmental stage if it bit them in the ass. They wouldn’t know which questions to ask, what development to measure, where to even begin.

They wouldn’t know about sensing, and how to tell when someone is highly sensing, and how to tell when interpretive thinking starts coming online, and how it interacts and interferes with sensing in various ways. Nor would they know how to measure which kids have interpretive thought replace sensing, versus which ones continue to switch back and forth, versus which ones remain in sensing after a total rejection of interpretive thought, versus which ones remain in sensing for the most part but can climb by their fingernails into interpretive thought if they had to, and so on. They wouldn’t be able to measure the developmental skills gained by those for whom sensing is a lifelong thing – skills no neurotypical person ever has to gain, so they’re not considered real skills.

But they are real skills, and people like me (highly sensing, capable of climbing with my fingernails to interpretive thought, but with sensing as my main mode of perceiving the world) develop extreme levels of skill in sensing our environments through sensing, that people who leave it behind at the age of four (a common age to leave it behind or experience a growth in interpretive thought, take note, researchers) or twelve (another common age to leave it behind or experience a growth in interpretive thought), do not learn those skills because they are busy learning to interpret the world through literal interpretation and possibly beyond even that. But those of us who retain sensing have our own way of developing skills that has never been studied because how can you even pick out which kids are highly sensing? You can’t do it by functioning label (many “low functioning” people are simply stereotypical aspies with severe motor planning problems; many “high functioning” people are highly sensing types who have scrabbled our way into “functioning” but are always in danger of falling down again… lookin’ at you again, Draggle). You can only do it through a “takes one to know one” or 'I know it when I see it" thing that is highly unscientific to say the least.

One of the most important things I ever read Donna say, was that there are autistic people who find that no matter what they do, it’s not enough for people, not enough for themselves either. So, say, someone is making great strides in intellectual thought. They may at some point say “this isn’t me anymore, I can’t do this” and drop all the skills at once, on purpose, in an apparent “regression” back to sensing. This can happen with other skills too. Not all “regression” is involuntary, and voluntary “regression” always happens for a good reason that ought to be listened to rather than condemned.

Anyway, Exposure Anxiety is a thing. And if you can stomach some “interventions” that look like abuse or neglect, her book Exposure Anxiety: The Invisible Cage is well worth a read for gaining self-understanding. My advice when you come to the “Just leave them alone until they’re forced to do something as themselves, for themselves, or by themselves” stuff is to skip it if it becomes too enraging. I understand why that approach works on some people, but if someone tried it on me I’d be furious. I already have had people say if I’d just starved a little longer, lived in filth a little longer, I’d have learned eating and food prep and housecleaning and bathroom skills. And for some people that’s true, but for me it would’ve been torture for no purpose, and could have killed me. So decided mixed feelings about the book, but it’s worth a read if you can handle things like that.

Here is the page that I got her “diagnostic criteria” from.

Here is a page about her book, Exposure Anxiety: The Invisible Cage.

From the blurb:

Exposure Anxiety was first written about in Nobody Nowhere in 1991 as a syndrome of involuntary and compulsive avoidance, diversion and retaliation responses. A large section of my first text book, Autism; An Inside Out Approach in 1996, was dedicated to setting out strategies for managing, even reversing Exposure Anxiety. In 2003 I wrote the first full book on Exposure Anxiety.

Published in 2003, Exposure Anxiety; The Invisible Cage of Involuntary Self Protection Responses, is the first ever text book by a person diagnosed with autism specifically focusing on co-morbid anxiety and impulse control disorders effecting those on the autistic spectrum. It offers an innovative new approach to working with some of the most challenged people on the autistic spectrum.

Drawing on an 'Indirectly-Confrontational’ approach, this 336 page book gives case studies and a wealth of strategies to reduce and progressively overcome the compulsive and involuntary avoidance, diversion and retaliation responses of Exposure Anxiety. Exposure Anxiety is an 'Invisible Cage’ that challenges the person to either side with it and identify self with their own compulsive self protection responses.

There’s is considerable overlap between Exposure Anxiety and conditions such as Pathological Demand Avoidance (first diagnosed in 2008), Oppositional Defiance Disorder (first in the literature around 2002), Avoidant Personality Disorder and Dependent Personality Disorder. With this book actually written from an Inside-Out Approach, by someone who actually lived their entire life with and ultimately managed then overcame the condition, those looking for strategies for managing and reducing these conditions may find this book extremely useful.

I should note that, again, this is not unique to autistics, and people who are not autistic may find that this idea helps them understand themselves and their responses to the world in important ways. Among autistic people, there are even autistic people for whom if they got rid of the extremely severe Exposure Anxiety, there wouldn’t be a lot of traits left that got them diagnosed with autism in the first place. (One of many reasons I can’t see autism as one single condition.) Some people who use facilitated communication are able to use it because it bypasses the “can’t do it as myself” element of Exposure Anxiety. (If you’re wondering why this of all posts is tagged FC, that’s why.) Some just need someone standing next to them providing moral support as they struggle to move in ways that are their own and not someone else’s (a terrifying thing with EA sometimes), and others need much more extensive physical support specifically because it makes them feel like they’re not the only one doing the work of typing. They stand a lot to lose when tested and coming up lacking, but I guarantee you they exist, I’ve met them, and some have learned to type independently.

I worry sometimes that EA will be blamed for things that it isn’t causing and that people on the outside will do things that would work for someone with EA but would be cruel for anyone else. Even some people with EA have other problems such that those techniques would not only not work, but backfire considerably. This is my one worry about parents and professionals learning about EA: They can use it as one more excuse for activity that, if not considered therapy, would be considered abuse or neglect. Even though I can see exactly why it would work for the exact right sort of person. It’s too much power over people you might not understand all that well.

TL;DR: Exposure Anxiety is a term first coined by Donna Williams. It describes an extremely severe trait not unique to autistic people but highly common in autistic people. It makes us terrified to exist and be aware of our own existence. It makes us terrified of approaches (especially direct and confrontational approaches) that make us too aware that we exist. So we learn to do things and approach things indirectly, to do them 'behind our own back’ as it were, and to use a series of avoidance, diversion, and retaliation responses, as well as finding ourselves unable to do things for ourselves, as ourselves, or by ourselves. You should never assume that an autistic person being unable to do something is because of Exposure Anxiety, but it can be a valuable tool to self-understanding if you can handle an entire book in which all your defensive strategies are dismantled and laid bare.

And while she recommends Risperdal for this, I would say to try everything else before you even touch a neuroleptic, so dangerous are neuroleptics in long-term use. (And a “small dose” of Risperdal is not actually that small. Doses of 1 mg or less are common, not tiny. Less than 1 mg was enough to make my autistic catatonia so bad I couldn’t get out of bed without help, nor do anything else for myself. You’ve been warned. For more information about the potential effects of neuroleptics on autistics, see Autistic People Against Neuroleptic Abuse. People prone to catatonia or with catatonic traits (most autistic people) are more likely to have severe and even life-threatening reactions to neuroleptics, even the atypicals, even at 'low’ doses, so be careful if you decide to try it. Of the autistic people I’ve known, the vast majority have horror stories about Risperdal, with only a handful finding much good in it.)