Exposure Anxiety versus Pathological Demand Avoidance.
Someone wrote to me about the differences between Exposure Anxiety (EA, as written about in the book, Exposure Anxiety; The Invisible Cage ) and Pathological Demand Avoidance (PDA). Here are my reflections on those differences:
Hi Donna,
A big thanks for all the emails that come my way – please keep me on the list, they are really useful. Having read ‘Exposure Anxiety’ now for the second time, would you agree that this is another term (all be it a more useful description) for Pathological Demand Avoidance? I would be interested to hear your view.
DONNA: Its a great question of course,
I’ve been asked this before. PDA doesn’t seem to respond well to usual education and treatment methods used with those with Autism and those with EA as a co-morbid condition with their Autism are in the same position.
This is from a PDA support group website…. www.pdacontact.org.uk
“Pathological Demand Avoidance Syndrome is a pervasive developmental disorder related to, but significantly different from, autism and Asperger syndrome. First identified as a separate syndrome at the University of Nottingham, research has continued at the Early Years Diagnostic Centre. Children with PDA would previously have been diagnosed as having ‘non-typical autism/Asperger’ or ‘pervasive developmental disorder not otherwise specified’; but it is important to diagnose them separately since they do not respond well to the educational and treatment methods that are helpful with autistic and Asperger children, and since appropriate guidelines for education and handling have been produced by the Early Years Diagnostic Centre specifically for children with PDA”.
DONNA: Here’s the diagnostic criteria for PDA below (quoted from the website: www.psychnet-uk.com/dsm_iv/pda.htm) .
“Individuals with PDA are typically socially manipulative with people,…”
DONNA: those with EA are not at all any more or less manipulative of others than anyone else… in fact they are generally so busy trying to trick their own compulsive avoidance, diversion, retaliation responses they get very little time to think about others as they are so damned busy just trying to function in basic ways… eat, dress, use the toilet, stay, go…
“…and therefore superficially socially skilled, which sets them apart from Autism and Asperger Syndrome”
DONNA: again, people with EA can be severely impaired in their social skills, especially where the interaction between EA and personhood becomes so demanding there is little ability left to focus on social skills.
“…The most central characteristic of people who have Pathological Demand Avoidance (PDA) is their obvious and obsessional avoidance of the ordinary demands of everyday life”.
DONNA: yes, this fits EA, they both share this, but one is voluntary, essentially ‘ego-syntonic’, meaning deriving from the self, the other is involuntary, essentailly ego-dystonic and those who type about their experiences with EA communicate they don’t at all mean or want to behave this way.
“People with PDA lack a clear and defined sense of self, “…
DONNA: here, EA is quite the opposite as those with EA who have used typed communication in spite of the condition have expressed a highly developed, yet trapped sense of self, probably because, like those with marked Cerebral Palsy, they know what’s happening isn’t ‘them’ but can’t change that.
“and hence do not view themselves as being responsible for their actions.”…
DONNA: one can have a personality disorder and not feel they are responsible for their actions but another person may have an impulse control disorder and also be not responsible for their actions… similarly with Tourette’s for example, … and EA is definitely the latter… yes, EA and PDA share that they don’t view themselves as responsible for their avoidant responses but one is having a psychological issue, the other a chemical one causing involuntary responses that can cause the person themselves extreme despair and entrapment. Avoidant Personality Disorder (the extreme of the sensitive personality) will cause similarly involuntary avoidance that is not a manipulative indulgence deriving from shallowness but deriving from an anxiety disorder they can’t chemically manage and is treated with antidepressants or mood levelers.
“Therefore, the person with PDA is highly motivated to avoid demands and is so able in this domain that they may even appear manipulative, as a variety of strategies are used with such determination toward the desired outcome of escaping demands.”…
DONNA: yes, I can see why they LOOK similar and can expect many with EA are misdiagnosed with PDA and many with PDA may be wrongly thought to have EA (or could have both) , but I would never say EA makes one HIGHLY MOTIVATED to avoid demands, because its not at all about volition or motivation. In fact EA involves the opposite where the stronger the desire and motivation is to do something the more it triggers the opposite response, so its like an involuntary fight-flight response gone mad.
Interestingly, EA occurs a lot more with those with tics and it may be EA is a combined product of the Sensitive-Avoidant personality combined with the associated state of Social Phobia and when in those who also have the energetic, hypomanic or manic states of bipolar or adrenaline addiction it gets its energetic drive, and the final straw may be that with the same high dopamine that reinforces addiction to one’s own chemistry highs there may be co-morbid OCD or Tourettes- both impulse control disorders… in other words, true EA as I know it may only occur when several conditions come together and certainly information overload issues of Autism will raise those stakes and keep EA high in these individuals).
I also feel that Reactive Attachment Disorder (RAD) could exacerbate EA and that one doesn’t need to be abused to develop RAD. Being face blind, having social emotional agnosia (inability to read facial expression, body language, intonation), auditory verbal agnosias and visual agnosias (meaning deafness, meaning blindness) and tactile agnosias (difficulty processing body feedback) are enough basis to significantly alter the usual course of bonding processes. Quite simply, those with RAD may have an already disturbed relationship to body, emotions and be at greater risk of social phobia and intimacy problems which could conceivably exacerbate a case of EA.
“Passive Early History in first year,”…
DONNA: here I’d say EA is one of those things that seems far more common in those who appear to have had their ‘Autism’ from birth. I’ve also had a number of letters from therapists remarking that EA seems almost ‘standard’ in those with Fragile X (a particular form of autism) though it occurs in those with other types and in some members of the general population. Rather than those with EA being ‘passive’, if you look at the early photos of children who developed severe EA, early on they still show signs of being overstimulated and avoidant in how they pull in with their limbs, in tensing and eye related behaviours.
“Continues to resist and avoid ordinary demands of life,”…
DONNA: many people with EA will try very hard to join in or comply but in the overstimulated state they are triggered into involuntary avoidance, diversion, retaliation responses… in fact what’s interesting with EA is you see constant tiny hints of the person continuing to wish and try in spite of years of failure because of impulse control problems.
“Surface sociability, but apparent lack of sense of social identity, pride or shame.”…
DONNA: PDA is not the same as EA here. I think any impulse control disorder that blocks simple direct interactions will interupt social identity and make pride or shame far less relevant than the pure effort to simply function, but many with EA who do type or communicate have an intact social identity that is internal where they have been unable to live it externally because of the EA.
“Lability of Mood, impulsive, led by need to control.”…
DONNA: people with EA are no more or less controlling than others but are perhaps so triggered into EA by a non-comprehending, directly confrontational and socially invasive environment that they have a great reason to need to keep that environment from triggering their EA and incidentally sabotaging what functioning they do have.
“Comfortable in role play and pretending.”…
DONNA: I don’t think anyone with chronic EA is ever comfortable and ‘pretending’ is stretching it re EA. Being driven to use self delusion and characterisations as a tool may be more to the point, and yes, extremely shy people may need to hide behind anything to function so if one of the conditions involved in EA is extreme sensitivity, then finding one can function better when hiding may be a useful tool. But this doesn’t make PDA the same as EA. Type with someone with EA and you will usually get someone strikingly geniune. In my view, the use of characterisation in EA is more akin to how stutters have used singing to get around their stuttering.
“Language delay, seems result of passivity.”…
DONNA: I see people with EA who are utterly exhausted by what they fight against. So far from passivity. A percentage who do speak do so in an indirectly confrontational manner, through adverts, songs, animal voices, cartoons etc… so not the same as that group which may have depression where language delay may be related to passivity. Most with EA are not at all passive but highly agitated and restless. I see them wander in and out of a room, pacing, unable to sit for any length of time or unable to get up in spite of great agitation sitting where they are… hardly passivity.
“Obsessive behaviour.”…
DONNA: Obsessive Compulsive Personality Disorder is about the desire to control but this is not OCD and both are common in those on the spectrum but not necessarily in the same people. It is my experience that EA seems to be very common not with those with Obsessive Compulsive Personality Disorder but in those with OCD and Tourette’s tics. OCD is more common in those with the Vigilant Personality trait- one which involves Solitary traits- not with the Conscientious/Cbsessive-Compulsive one. Obsessive Compulsive Personality is ‘ego-syntonic’ meaning the person identifies with that obsessive nature. OCD is ‘ego dystonic’ and those with OCD usually don’t enjoy this or see it as part of their ‘selfhood’ but something that distracts from or intrudes upon expression of their selfhood.
So its my hope that in pointing out the difference between EA and PDA that people might realise that whilst PDA is a related Autism Spectrum Condition but separate to Autism or Asperger’s that it is my experience that what I call Exposure Anxiety (EA) is a co-morbid disorder that can occur in people with Autism Spectrum Conditions, perhaps more common in those effected by co-morbid impulse control, anxiety and childhood bipolar disorders.
Thanks for your question. I do discuss this broadly in my upcoming book, The Jumbled Jigsaw, out soon with Jessica Kingsley Publishers.
I hope this has been some use.
Donna Williams *)
author, artist, singer-songwriter, screenwriter
http://www.donnawilliams.net
Ever the arty autie.
I’d just like to note that with some of the comparisons, you are comparing ‘apples and oranges’. PDA was described by someone who *did not* have that condition, while EA was described by someone who does (you). Therefore, the internal state information for PDA is much less accurate than EA.
So, for example, being ‘motivated’ to avoid demands is how they appear from the outside. To someone who does not understand EA, such a person may *seem* motivated to act in ways that they are really compelled to despite really not wanting to.
Regarding demand avoidance being voluntary – this is not true. According to http://www.pdacontact.org.uk/frames/index.html?criteria.shtml , PDA children ‘can’t help won’t’ – in other words, they feel compelled to resist demands.
Lacking clear defined sense of self – this is based on outside perceptions and simply means they appear to other to lack a clear defined sense of self – not that they actually do. Could EA be that way as well? Same for lacking social identity – this is how they appear to others who do not have PDA, not necessarily how they truly *are*.
PDA individuals often aren’t comfortable either, but relatively more comfortable pretending than when not pretending.
Could PDA be a specific subtype of mild EA in which the primary issue is demands?
Hmm.
Yes, I’ve cited an information site for PDA and that doesn’t mean the info on the information site is written by someone with PDA. Someone with PDA may very well dispute such info as written from an outsider’s perspective. as well as one written from the way PDA looks outside rather than how someone with it experiences it.
One of my traits is the idiosyncratic personality trait. This trait means I am distressed by forced conformity. Other personality traits like the Leisurely trait involve fear of compulsory activity, the Adventurous trait involves fear of boredom and motivation toward excitement and the Self Confident trait is motivated by the desire to be special. If one strongly had all four of these traits in personality disorder proportions (I have only the idiosyncratic trait) then demand avoidance would be pretty likely.
The weak identity issue is common to those with the Mercurial personality trait, the extreme of which is Borderline Personality Disorder and such people tend to fear aloneness, so there’s be far higher sociability in someone with ASD with this trait (although there are other sociable personality traits).
Personality traits like the Vigilant trait (in which fear of entanglement is usual and self protectiveness is high) – another of my 5 dominant personality traits – might be an example of one which in disorder proportions could significantly exacerbate a risk of EA.
Could PDA be a subtype of EA?
Well the primary issue with PDA is DEMANDS.
The primary issue with EA is fear of EXISTANCE triggered by an acute sense of audience.
And yet, unlike Avoidant Personality Disorder, anti-depressants won’t shift EA, but mood levelers seem to.
This would indicate that unlike Avoidant Personality Disorder, EA is also not any direct manifestation of depression either.
With EA, that sense of audience can be to oneself, others need not be present.
A person with EA can feel so overwhelmed by the AWARENESS they need the toilet, need a sweater, need a drink, wish to touch art supplies, wish to say hello etc that they can compulsively avoid, divert and retaliate against that awareness.
I think it’s more likely that someone with PDA may also have EA than that PDA is any subtype of EA.
I guess I don’t understand what you mean by EA.
I have PDA, and I identified with some of what you said about EA (what little I actually understood) in terms of my own reaction to being bossed around.
I feel like they are trying to control me and get ‘inside’ me, and I need to defend against that. I can relate to your thing about keeping ‘the world’ away with regards to that. I don’t understand what you mean by the sense of existance. And the few times I obeyed commands despite very strong internal resistence, I didn’t do it ‘as myself’ but as some character. I wasn’t allowed to pretend to be an animal, for example, so I’d pretend I was a dog being cruelly forced to act human and walk on hind legs. I’d try to stand the way my dog did when I held her front paws up and made her stand up.
Now, I know that’s not the same as full-blown EA, but how is it any different except being milder?
Imagine, if you can, being suicidal but being so young you don’t yet have the concept of death or how to be rid of yourself. Maybe you are 6 mths old, a year, two years old. But maybe your solution is to tune out the experience of having a body, seek either to be as still as possible, barely even breathing, and just stare, trying to lose yourself in the stillness (Zen Buddhists seek this) or creating a hum or physical rhythm or running around and around in circles until you can’t experience the overwhelming heaviness of experiencing self.
Now, imagine that you don’t want to feed or dress or wash or toilet a body you have succeeded in becoming estranged from, which you experience as an appendage, something following you, something which is distressingly causing others to notice you. It is the intense desire to be invisible.
Now imagine part of you begins to accept life, observes fragments of things which trigger want. You try and reach out to those things but by now, years of self training into more calming non-existance competes intensely. The result is you sabotage your own attempts through involuntary avoidance, diversion, retaliation responses. If others initiate, you may very very much want this, but the other half of you governed by Exposure Anxiety finds this as intensely threatening, so there’s a battle within the self and often, sometimes usually, it is Exposure Anxiety which wins. Hence many with acute exposure anxiety are able to type out very different emotional reality to what comes through in their behaviour. This is why it’s called an Invisible Cage.
I guess, re PDA, similar isn’t same. But the Exposure Anxiety book and the Indirectly Confrontational Approach in it, apply to many other conditions – Passive-Aggressive Personality Disorder, Dependent Personality Disorder, to a degree to Avoidant Personality Disorder, and clearly it has significant relevance to PDA too.
What you’re describing is more along the lines of Sociopathy, the chronic rule breaker. I have this strongly on one side of my family so I can understand. I’m, ironically, quite the black sheep because I generally don’t mind social rules at all. I have the Idiosyncratic trait which fears forced conformity, but I don’t have the adventurous trait which rebels against structure, fears boredom and lives for excitement. Nor do I have the Leisurely trait which fears compulsory activity and lives for the freedom to do as they please. The vigilant trait is intensely driven toward autonomy and, hence, fears submission and can get extremely proud when forced to submit. So two of my traits could result in stronger demand avoidance than other people, but I don’t have enough of a collective of traits to express my chronic anxiety in a PDA way.
My traits are all of the solitary type – solitary, vigilant, idiosyncratic, artistic except for the self sacrificing trait which tends to shun gush and attention and prefer to disappear/hide in the helper role. I can see how my traits contributed to a greater predisposition toward Exposure Anxiety.
out of interests, do you agree that those with PDA have very poor sense of self?
I feel that those with EA have a usual if not strong sense of self but find it overwhelming.
Donna *)
OK, now I think I understand. Is it like what Amanda Baggs is talking about in her blog entry Chasing Oblivion ( http://ballastexistenz.autistics.org/?p=274 )? And maybe Tito Rajarshi Mukhopadyay in his book The Mind Tree when he said he wanted to be a ghost and started pretending he didn’t have a body anymore?
I have a pretty good sense of self. I didn’t when I was younger, but that wasn’t so much that I didn’t understand myself as that I didn’t have a clue what the others were like. I think that’s probably just a serious misunderstanding, like thinking autistics lack imagination.
I would definitely identify Tito’s challenges as involving acute Exposure Anxiety and it’s aftermath. Birger Sellin too. There are also some with EA who have appeared not to have it by entering a helper/carer role and hence avoiding true expression as a self. As such if such a person is also parent of someone with autism, the carer gets so addicted to the hiding space of carer it disempowers their autistic child but also ensures the carer with EA will never work more constructively and directly with their own EA. But, yes, in my view, Tito is a great example of someone working constructively to find ways around acute EA… hence augmented communication can be an essential godsend to those crippled by chronic involuntary avoidance, diversion and retaliation responses.
Donna Williams *)
there is also a difference between Exposure Anxiety and the hypnotic call further into the depths of psychotic depression. I experienced the second in a 6 month breakdown in early puberty (which lead to an episode of Catatonia) but I’d had EA all my life with it peaking when I developed functional language in late childhood. Hence I can directly compare the two. EA is far more instantaneous, involves no volition or lack of motivation in fighting it. EA is a hair trigger set of responses, one can’t become intrigued by EA and go deeper and deeper as one can with psychotic depression in the grip of apathy and social withdrawal. I also spoke to others who let themselves spiral into oblivion as part of apathy, social withdrawal, the addictive call of deeper depression and intrigue with what that deeper state of depression would be like. By contrast EA is completely different, it’s like that example the ‘hair shirt’ that you keep trying to get comfortable but no matter which way you move you get irritated by the hair shirt… you end up interacting more with your own EA than with life itself. I compare it more with ‘living with fleas’. It’s quite an ongoing state of agitation and anxiety but can be expressed in any, often fluctuating combo of avoidance, diversion, retaliation responses.
Donna Williams *)
http://www.donnawilliams.net
The desire not to exist or be invisible can have many drives but with EA it’s distinguished from depression because there are two strongly opposing drives. The drive to join the world is as strong as the one to close it out. Hence when they compete with each other you get people who try and enter a room then pace out of it, who go to smile at someone then grimace scarily, who go to kiss or hug but pinch and bite at the last instant… that sort of thing. There’s a fab example in Exposure Anxiety; The Invisible Cage of a man I knew asking for a congratulatory kiss on the cheek upon his engagement. With full intent to do so I instead found I had lunged forward clenched his arm and sunk my teeth into it. I was 26 years old. I jumped back, shocked and shamed. He’d known me since I was 3 so there was no problem. So you can see how different that is from being straight forward suicidal whether in early childhood or whatever. Those with EA can come to despair at their own bizarre involuntary behaviours and feel entrapped by them and fear they will hurt, ignore or reject those they most like.
Donna Williams
http://www.donnawilliams.net
“What you’re describing is more along the lines of Sociopathy, the chronic rule breaker.”
PDA is not at all like sociopathy.
Sociopaths do not care about the rights of other people, they feel they are entitled to us and abuse others.
PDA individuals care about others to a normal or over-intense degree (since intensity of feeling in general is often greater in PDA). This may not always be visible, due both to the same kind of social problems as other autistics, and the fear of demands, but that doesn’t mean it’s not there.
For example, both a sociopath and a person with PDA may scream insults at someone until that person is emotionally exhausted enough to give into their demands, but the sociopath planned it and does not mind hurting the other person, while the PDA person felt compelled to do it and feels badly about it.
And the only way you could manage a sociopath so that they never attack you is to never interfere with what they want and never make any mistakes. It’s the impossible challenge that abused spouses deal with. Whereas if the PDA person is reassured and carefully taught that nothing bad will happen if they let someone else have control sometimes, they will become cooperative and helpful.
Donna,
I have purchased The invisible cage, and hope to find more answers. Eli was diagnosed with OCD but your definition, obsessive compulsive personality makes sense. Eli, well he tries to shake hands now, but he ends up biting the persons thumb. Not hard, but he bites. There is only one person at work he spends all free time just shaking the guys hand, never biting. The bites are for all new persons he meets. I hope you can answer these for me.
#1. Eli cannot use 1 3oz bathroom cup, he has to use all (about 30) in the dispenser. He takes a drink from each and into the trash they go. Knowing this I removed them and placed the cups in the bathroom cupboard. He found and used the box of 200 in less than the f minutes he was in the bathroom.
#2. Eli will not sleep in a room unless he unplugs all things, clock, tv, lamps.