Exposure Anxiety - The Invisible Cage: An Exploration of Self-Protection Response in the Autism Spectrum

Rating:
Summary: Enlightening
Review: Few other books in my autism library are as marked up with exclamations points and my daughter's name as this one. Finally, finally, I not only have tremendous understanding of many of my daughter's behaviours, but tools to help her as well. It baffles me that exposure anxiety is hardly, if at all, mentioned in the general autism literature; clearly, it is one of the major challenges that are at the core of my daughter's autism. Though not all people with autism suffer from EA, this book is a must read for all professionals in the autism field, and any parents who suspect that this issue applies to their child.

Rating:
Summary: A must-read for anyone that has or knows someone with EA!
Review: I am high-functioning autistic and after learning quite a bit from Williams' earlier books, I bought "Invisible Cage" in hopes of continuing my self-education. Simply put, this book is amazing, one of those rare pieces where every page brings on a new revelation and sense that someone else "finally" understands.

"Invisible Cage" is not like her autobiographies: it is written like a manual for people dealing with EA, either in themselves or in a friend/relative/partner. It is organized into tiny sub-chapters with appropriate headings, with an index in the back for quickly finding information on a particular subject. For each, she describes what the external behaviors are like, the internal emotions/logic causing it, and how to help the EA person feel safe so they don't have to resort to that behavior.

Even if you have EA and have studied it in yourself for years, as I have, this book is invaluable. Williams has researched it not only in herself, but in many other autistics. I was surprised to find many behaviors that I was doing without realizing it, and *very* happy to finally have reasons for some things I could never explain. As EA is rare even in adults with autism, I've felt like a lone freak for a long time, so it was wonderful to finally realize that my brain really is being logical and I'm not just mentally ill or a psycho monster or something.

If you have EA, I highly recomend not only buying yourself a copy of "Cage", but giving one to someone in your life that you think you might be able to trust enough to work with. That way they can see your behavior for what it is and hopefully help you gain that trusting bond that is so hard for us to manage.

Rating:
Summary: Be careful -- watch out for lookalikes.
Review: In an easier-to-follow writing style than usual, Donna Williams lays out a description of a condition she calls Exposure Anxiety -- best summarized a deep terror of existing and being seen from the outside and sometimes even the inside -- and ways to recognize it and treat it. It comes in many degrees and manifests in many ways, but all, to Williams, stemming from the same root cause.

In reading the book, I didn't know what to think. I recognized a lot of the described behavior as mine, sometimes a better description than I'd seen in other autism literature. Some of it I'd been trying to get rid of for awhile.

But I analyzed the source of this behavior, and didn't come to a single cause, or even a couple causes:

Some came from an intense fear of exposure, that Williams calls EA but I see several reasons for (different strategies work for each). Some came from an intense terror, immobilizing, shutdown-causing, and far outstripping the first kind, was not EA, but stemmed from my thinking style and an excruciating but worthwhile process of learning and growth. Some came from a movement disorder, voluntary movement more difficult than involuntary movement, no anxiety attached. Some came from true fluctuations in the ability to fluently interpret and respond to information, no anxiety attached. Some came from a condition that exactly mimics EA in its effects but is completely non-anxiety-based although it can seem like anxiety. Some came from seizures.

I've tried several of the book's strategies and had several tried on me as a matter of course. Some, like mirroring people or finding ways of moving individual limbs, are effective, sometimes even if the condition involved is not anxiety. Some, like the reverse-psychology tactics and some of the medications, can give the anxiety-mimic fuel and grip over a person, working reverse of the way they would work for EA. Some, like antipsychotic drugs (even in low doses or atypical neuroleptics), can worsen or even cause things like the movement disorder, difficulty interpreting information, and seizures (they even made my *real* EA worse). Some, like letting an incontinent person run around for awhile without cleaning them up, have been reported to Adult Protective Services when someone did them to me, and lie somewhere between abuse and neglect.

I wish Williams had provided more information about distinguishing between EA and potentially lookalike conditions. She does discuss some of the lookalikes, not much how to tell them apart from EA, and some not at all. Some lookalikes look like anxiety from the outside even if they are not (and even if treating them as anxiety makes them far worse). The ways she describes getting rid of some are incomplete (what if a person has severe sensory issues that are *not* remediable in the ways she describes?) The whole book seems incomplete.

Of big concern is the learning-related terror. Because it is true anxiety, and because it always provokes shutdown and avoidance of the things that provoke it, it mimics EA in a large number of ways -- not to mention the post-shutdown rawness can *cause* EA. But unlike EA, it's part of something important that absolutely will not stop until it's seen through, even if it wreaks a lot of havoc along the way. Trying to curtail it with medication or other techniques designed to get rid of it is unlikely to get rid of it, but will greatly slow things down and prolong the agony. After that particular thing is seen through to a certain extent, any true EA will lessen on its own, as will the other kind of terror. There's a likelihood, too, that this kind of fear (which is only a sign of something else, and not a broken something else) is more common among a certain group of autistic people than among non-autistic people, and that there could be autistic people running around unable to use language and inexplicably freaking out because of the exact same kind of thinking that would lead them to what is ultimately a very positive thing.

Because of these concerns, I urge caution around the application of this book, especially on others. If you see the experiences and behavior that are described in the book, in another person or in yourself, don't assume that EA is the cause. If the cause does seem to be a kind of anxiety, ask yourself whether the anxiety comes about right after you seem to be thinking or perceiving with unusual clarity about a subject, particularly if the subject is unrelated to self-exposure (if this happens, and if the next feeling is either shutdown or all-consuming terror of destruction followed by shutdown and possible EA, do NOT treat it as EA -- it will make things worse). Any given thing might be what Williams describes as EA, and it might not be. Fully research the treatments the author describes, and weigh the potential long-term physiological and psychological damage they might cause before using them, particularly if you're using them on someone else. Make sure to check out all other potential conditions first before trying to treat something as EA that might not be.

These cautions aren't because all the treatments described in the book are harmful, but because what the author describes in the book can be EA or any number of other things (some in the autism literature, some not), and because some of the treatments described in the book -- ones that harmed me greatly, some permanently, even though I *have* the things the author refers to as EA -- are described with no cautions attached.

Some nitpicky comments: "We don't use 90 percent of our brain" is a myth. Monochannel may be an adaption to overload or monochannel may *cause* overload, nobody knows. The author's distinctions between what is autism and what is Asperger's are based around developmental theories that are inapplicable to many.