"Neurostrands"

This is a massive topic which I plan to return to.

In painstakingly unravelling the tangle of my head through stripping away acquired neuroses and ongoing exploration of "fits" for my bundle of remainining traits, I have identified a number of  "neurostrands" coexisting within my brain, which are (in order of discovery and/or diagnosis):

• Dyslexia
• Dyspraxia 
• Dyscalculia 
• Chronic fatigue syndrome*
• Delayed sleep phase syndrome
• Female-pattern autism
• Autism
• PDA
• ADHD

 * It is argued by some that CFS is neurologically rooted (link here)

None of my neurostrands operate in isolation.  Each strand, like cogs in a complex watch mechanism, directly affects every other one.

Starting with autism and female-pattern autism: many autistics claim all autism is one and the same.  Female-pattern autism, however, includes the distinctive traits of social mimicry and masking.  It was in fact this female autism traits list that prompted me to seek (and receive) my initial autism diagnosis 4.5 years ago.  So can I class female-pattern autism as a separate neurostrand from autism?  Must I be female-pattern or non-female-pattern?  Can I be both?  I guess this comes down to interpretation of what "autism" means.  If autism is taken to refer to the classicly understood male-pattern, then I don't fit that profile.  However, if "autism" is interpretted as representing the entire autistic spectrum, then I undoubtedly do fit that profile, though am I being greedy to claim autism, female-pattern autism and PDA (which is also classed as an autism spectrum condition)?!

PDA, like female-pattern autism, commonly includes social mimicry and masking.  Also, as for female and non-female pattern autism, it entails social communication issues and rigidity of thought (which is why it's classed as an autistic spectrum condition).   Discussion with PDAers and female-pattern autistics suggests masking is be more hardwired for PDAers. 

PDAers also have a cluster of traits including:

• Demand avoidance
• High anxiety
• Word play
• People focus (sometimes obsessively)
• Need for (personal) control
• Proneness to overload and emotional/explosion/meltdown
• Propensity for fantasy/role play
• Creativity
• Sense of justice

Dyslexics apparently share creativity and a drive for justice, as well as being overly distracted by background noise... which is an ADHD trait... as is proneness to overload and emotional explosion... which is an autistic/PDA thing. 

ADHDers have a tendency to procrastinate and avoid tasks (as do PDAers). ADHDers may frequently be late... as do PDAers... and dyspraxics/dyslexics... and DSPSers (delayed sleep phase syndrome-ers, who are unable to wake/function early in the day). 

DSPS sleep-deprivation can cause extreme fatigue and brain fog (as for CFS).  In fact, for many DSPSers, myself included, our brains are foggy for an hour or three after we wake even if we've had enough sleep, because of sleep inertia.  Brain fog is also a trait of chronic fatigue syndrome.  Autistic people when overloading may experience brain fog also.

The hallmark trait of DSPS is being hardwired to sleep and wake later than society's normal schedule.  Recent studies have connected DSPS with ADHD (and I know that many fellow members – though not all – of the Facebook DSPS groups I'm member of have ADHD as well).  Sleep delay, however, is also a PDA issue, in that the demands of going to sleep and waking up are frequent triggers we PDAers feel compelled to avoid.

The interplay between these various, co-morbid neurostrands is highly complex.  It is, I think, likely that individual strands exacerbate others and, as a result, no one strand can be thought of as isolated and independent: their combined influences are cumulative.

Demand Avoidance-Driven Emotions

My Demand Avoidance appears to operate at a level beneath conscious thought and emotion, so for example, if someone tells me what to do/think/feel/like triggered Demand Avoidance causes me to:

1. Object to this person's directive with the equivalent of, "I do not want to that."
2. Feel negatively about the request and sometimes the person giving it.

These Demand Avoidance-generated feelings tend to take the form of irritation, anger, resentment and/or withdrawal: "so and so was really thoughtless in pushing that on me!" Or "I just don't want to know, I am no longer interested in what they have to say."

This all goes on subconciously so that my triggered emotions feel natutral.  I think I have been seriously pissed off with people because of my Demand Avoidance many, many times in my life.

For example, I was seeing a counsellor a year or two ago and noticed that I had suddenly dissociated myself from what she was saying and was feeling awkward and a bit resentful.  I thought back to what she had last said, which had been to invite me to reflect on what I felt, and realised that this invitation had triggered Demand Avoidance.  I told her this and she became upset; she said she'd given the invitation with good intentions.   I explained that my Demand Avoidance was triggered regardless of intentions and manners.  I get Demand Avoidance against taking my jacket off in the summer if I notice I'm too hot, and this has got nothing to do with how polite my body was in signalling to me.

Another example of my emotions being driven by Demand Avoidance came in an online support group a day or two ago.  Someone, well-intentioned, responded to a comment I'd made by using the phrase "have to" and followed by a link to some self-help theory (I didn't digest what the link was about because my Demand Avoidance had already slammed the shutters down in my head and I just did NOT want to know).  It's not just that this person used the phrase "have to" (trigger #1), it was that they assumed I wished to be educated and read what ever text I'd be taken to if I clicked on their link: this was a triggering Demand (#2).  My Demand Avoidance reaction generated an emotional response of anger and resentment.  I scathingly decided not to reply to this person's well-intentioned comment ("How dare they patronise me?!")  And stepped away from the conversation.  However, as  time moved on, I noticed my anger had not.  On reflection, the amount of anger I was continuing to feel was phenomenal.  As the post in question was in a PDA support group, I decided to reply to this person's comment explaining how ,although I realised their intention had been good, they had triggered me.  I have to be careful communicating with people when triggered because I can be harsher than I'd like.  Thankfully on this occasion I seemed to have mananged to communicate respectfully!

I don't know if this is common to other PDAers, but I do get severely triggered by people in support groups who are demandy by:

• Using phrases like, "you must..."
• Giving me unsolicited advice/playing the expert (assuming I want to be taught by them)
• Making long posts I feel I *should* read (*Should* = a Demand, even if it's derived from my own sense of fair play)
• Talking over me
• Making attention-seeking posts (including large, screen-filling photos of themselves)

I have at times been so triggered by this style of communication, regardless of how much I rationalise that the person in question means no harm, that I have (sometimes after months of triggered agonising) resorted to blocking them to save my own sanity.  This is not something I take lightly or feel good about doing, but the level of Demand Avoidance-produced negative emotion generated is unbearable.

Other PDAers I've been in conversation with appear not to be triggered so much by this sort of thing.  I feel that what triggers us varies hugely from PDAer to PDAer.  My particular social sensitivity may be part-rooted in my visual hypersensitivity, dyslexia and Irlen's syndrome (word blindness).

I do find that increased awareness of how my PDA works within me helps me to navigate the world better, but some triggers (like those described above) have yet to budge.  At least with awareness, I can "own" the negative feelings my Demand Avoidance produces.

Graphic Meme Library

I've organised all my graphic memes into a "library" by subject.  Some have been put into more than one section, for example, I've placed memes about anxiety and demand avoidance on both the anxiety and demand avoidance pages.

There are around three hundred memes and it was becoming increasingly difficult to find them all, even for myself.  My desktop filing system is far from perfect and this new library should make finding them a lot easier.

The next step is for me to caption each one so they can be searched for.

In the meantime, here is a list of links to each meme page:

• Anxiety
• Autism and PDA
• Childhood and parenting
• Control 
• Co-morbid conditions
• (Pathological) demand avoidance
• Diagnosis (including misdiagnosis)
• Education
• Emotions (including empathy)
• Fantasy and role play
• Hierarchy and rules
• Impulsiveness
• Intolerance of uncertainty 
• Meltdowns
• Overload and burnout 
• Quiet space 
• Relationships
• Routine  
• PDA (general)
• Social mimicry and masking
• Wordplay (including rhymes)
• Work

Invisible Demand Avoidance

Pathological Demand Avoidance is a fundamental part of my being.  It's always been with me (I have never been free from it) and its all-pervasive presence is my Normal.

In learning about PDA through joining the Facebook Adult PDA Support Network after I came to suspect having PDA three years ago, I was a bit flummoxed when fellow members stated that you know if you've got Demand Avoidance: it's blindingly obvious.  Well, it wasn't obvious to me and still isn't.  I think I've become so enured to Demand Avoidance, like anxiety, that I don't tend to notice it in operation at all.

Although hard to detect, my Demand Avoidance is very much pathological: it is hardwired and present regardless of my attitude towards the things it causes me to feel compelled to avoid.

In having lived with PDA my whole life, I am accustomed to it.  The challenge for me is being aware of it.  I feel my pathological Demand Avoidance is an automatic, subliminal trigger that provokes negative emotional reactions against my doing or accepting things.  For me, its triggering is so subtle that I tend not to notice it.  Pathological DA sends feeling-messages to my conscious mind saying things like, "that is very bad!" "I don't want to do that!" "There is danger." "It's a lost cause." "Just don't bother – really!" "It's all nasty!" "You'd fail" "It would be a horrible experience!" "Run away and Avoid!"  And my conscious mind habitually accepts all this negaive rubbish as incontrovertible fact.

So, in this way, my pathological Demand Avoidance coerces me at an emotional level to switch my intentions, ideas & motivations from what I was intending to do to Avoidance.

Demand Avoidance presses me to go with it and accept that I can't do things for the first reason that comes to mind.  Demand Avoidance lurks there, rapidly nodding agreement to all opt out options that cross my mind.  It's a back seat driver yelling at me to surrender and accept that every plan I have made was reckless and untenable.  If I miss a commitment once, my Demand Avoidance digs her claws in the next time shouting out, "look, you've avoided it once, you can avoid it again!"

I have learned to be canny and deprive my Demand Avoidance a foot in the door by withholding excuse-options from her.  If I do a course, for example, I am canny not miss a class (otherwise DA tells me clases are missable).  I discipline myself against Demand Avoidance (it's very tiring) long enough so that chores (such as making the bed and washing up in the morning) become autopilot and I can do them daily as "this is what I do every day".  My Demand Avoidance always moans, but it acquiesces because it is an "I do this every day" thing.  There is no excuse readily available for DA to lure me out on.  I know from experience that if I slack off for one, single day, my Demand Avoidance rears up ugly and strong makes my resuming that routine nigh on impossble.

What is PDA?

PDA stands for pathological demand avoidance.  It is classed as an autism spectrum condition.  The autism spectrum is, by contempory definition, much broader than its earlier incarnation that was boundried by the Triad of Impairments, although many people (including professionals) persist in assuming that being on the autism spectrum equates to matching the cliched autistic male profile.  PDA Society say:

Pathological Demand Avoidance (PDA) is now widely recognised as a distinct profile of autism. Individuals with a PDA profile will share similar difficulties to others on the autism spectrum in the following areas:

• Social Communication Difficulties
• ​Social Interaction Difficulties
• Restrictive and Repetitive patterns of behaviour (including sensory seeking or sensory avoiding behaviour)

In addition to these points (which, being a PDAer, I may come back to argue with elsewhere in this blogsite!), PDA comprises a cluster of distinctive traits:

• Hardwired demand avoidance (with perceived/triggering demands being extremely diverse and including polite requests, prompts, expectations and even our own ideas).  Our demand avoidance is so pervasive that we often don't notice it in action.  The process is only painful, I think, if our avoidance is hampered or prevented.
• Hardwired extreme anxiety.  This is something all PDAers live with from birth, although we may often be so enured to it that we are unaware that it is there.
• Intolerance of uncertainty.  We PDAers need to know what's happening.  Uncertainty tends to cause us severe anxiety and stress.
• Need for personal control.  This trait scores very highly for PDAers.  We tend not to want to control others, but our intense need to control our own worlds can spill over onto other people.  Our control-need may be explained as by-products of our needs to avoid demands and uncertainty.
• Social mimicking and masking is carried out by a high proportion of PDAers.  This tendency appears to be more hardwired than for female-pattern autistics.  Again, the operation of this trait is so pervasive as to be imperceptible.  This imperceptibleness is, perhaps obviously, two-fold in that observers will be unaware of effective mimicry and masking, although we may appear slightly artificial, shallow and/or inappropriate.  This chameleon tendency also causes us, sometimes against our own best interests, to appear just fine on the outside so that potential help/diagnosis is refused.
• Comfortable in role play and/or fantasy.   Role playing may be used to avoid demands (for example, imagining being filmed for a TV series while we do a task in order to step away from demand avoidance against doing it).  Fantasies are a form of internalised role playing and may often take the form of ongoing private soap operas.  They are a way of escaping extreme stress.
• Creativity. PDAers are a highly creative, free-thinking bunch.
• Love of wordplay is a perhaps surprising common PDA trait.  PDAers frequently feel playfully compelled to rename other people, pets, places, etc, as well as enjoying punning, rhyming and hyperbole.
• People-focus, sometimes obsessively.  PDAers tend to be drawn to people (although we also tend to find social interaction exhausting and/or irritating).  We may become obsessive about certain people, for example, developing strong crushes.
• Strong sense of justice and defense of the underdog. We tend to fight tiger-like to protect people or animals being harmed by others.
• Disregard for hierarchy.  We tend to dole out respect where it is due, rather than according it to people because of arbitrary rank.
• Impulsiveness.  PDAers often have an impulsive streak where, when the mood takes us, we can find it impossible to resist doing what ever random action our whim has taken a fancy to.
• Emotional lability, meaning roller coastering emotions, connects I think to our impulsiveness and anxiety.  We may often have alexithymia (lack of awareness of our own emotions) which, coupled with masking, can cause for quite complex emotional expression.
• Proneness to overload and meltdown.  We PDAers overload easily.  Triggers include sensory bombardment and social stress.  If we can't escape what is triggering us, we will likely escalate into meltdown.  Meltdown, regardless of how in control and dominating we may appear on the outside, is a totally involuntary process.  It may be expressed as physical aggression, or may be more contained as snipy bad mood.  I have a hunch that fleeing is another form of meltdown.
• Need for quiet space.  We need lots of quiet downtime in order to avoid overload and meltdown.  Quiet time is an essential for us and should not be confused with laziness.

About This Blog

This, my first post here, is my second actual blog post.  My first ever post was published by Jessica Kinglsey Publishers yesterday (17th May 2018) to coincide with the release of the book I compiled, PDA by PDAers.  Thus inspired, I decided to open a Blogger account (behold!) to continue posting.

So having overcome my Demand Avoidance against blog-writing and become a blogger (how I hate labels!) I have excitedly gone into hyper-focus mode and scattily planned this blogsite (is that a word?) in my head.  It will, I have decided, serve several functions:

1) Act as an encyclopedia of PDA (from my perspective)

2) Be a library for my graphic memes.  They are currently only published in full on my Facebook page, which is not searchable. I am planning to organise them by theme in this blogsite to make relevant ones easier to find.

3) Give me a platform in which to opine about PDA in greater detail than the available space on my graphic memes allows.