Tuesday, July 21, 2020

An Exploration of PDA Masking

This is the transcription of an animated video I made for the Positive PDA Virtual Summit 2020 on the subject of PDA masking.

Masking means hiding your true feelings; often seeking to appear calm and happy.
A form of masking is social mimicry, which means copying what you think are the right behaviours  to fit in and get along with people.

Before I get stuck in, I should point out that while many PDAers, including myself and Milly, do mask, some PDAers say they do not mask at all.
So not all PDAers mask.

Awareness that many PDA children mask, for example in school, has lately been growing. This awareness, to my mind, is of very high importance because, if educators, diagnosticians and other health practitioners are not aware of masking, and how extensive it can be, they will be bound to assume that the child has no real issues.

I had direct experience of this when my daughter Milly was assessed for ADHD last year. The local child development centre had updated her autism diagnosis to include PDA when she was five. I’d then requested them to assess her for co-occurring ADHD.
The clinician who assessed her pronounced that she could not be ADHD because her teachers had reported no hyperactivity at school, despite her extreme hyperactivity at home. She said ADHD traits cannot be masked, and her behaviour at home was due to autistic sensory seeking.
It took me a long time, but I eventually overcame demand avoidance and asked my GP to request a second opinion on account of the extent of her masking not having been considered.
One of the centre’s lead clinician’s phoned me in April and agreed that Milly needs to be reassessed by one of their team observing her in school. This lead clinician was aware that teachers are unlikely to be able to spot the subtle signs of masked ADHD. 

Masking school children, are therefore vulnerable to being denied support and accommodations, even if they have autism diagnoses, with or with out a description of PDA.
School staff are likely to focus their attention on extroverted children.
However, masked PDA kids, like Milly, are actually very anxious and stressed behind their masks.
I’ve heard of older masking PDA school kids who have attempted suicide.
Yes, these masking PDA children do need support.
They are not having an easy time.
Their PDA is not “mild”
It is merely hidden from view



I spent the majority of my school days locked in immersive daydreams and desperatety unhappy and depressed

Another major issue that can occur when professionals don’t understand masking is that if parents report their child being loud and unruly at home, perhaps having meltdowns, when they are mouse-like model pupils in school, professionals have been known to assume this is caused by bad parenting: “they are perfectly well-behaved in school, so if Mum says they smash the house up and scream when they’re in her care, it’s obviously her fault.”

Perhaps worse still, parents, especially mothers, can be accused of FII (fabricated or induced illness, the new term for Munchausen by proxy) and be harassed by social services as a result, instead of the PDA child being given appropriate support. This is really, really not good or remotely helpful.

Awareness and understanding of PDA masking is therefore, in my opinion, vitally important.

Now, although masking is not a universal PDA trait, it does seem to be a very common one, and, where it does occur, it is often to an extreme extent.

I believe PDA masking is qualitatively different to the type of masking that’s abhorred by many autistic people. I think it’s important for this to be understood.

As I’ve said, I’m a PDAer who does mask. Social mimicry was the trait that jumped out to me on a female autism traits list I saw back in 2013. I was shocked. I’d always done this, but never before seen it described as a recognised human behaviour. I realised, on reflection, that I fitted all the other traits on the list as well. I asked my GP to refer me for adult autism assessment, and was diagnosed a few moths later.

I enthusiastically sought fellow autistics to converse with online. I was highly confused to find that masking and social mimicry were considered very bad things that neurotypicals wanted autistic people to do, but that autistics hated.
How could this be? No one had told me to mask. My masking felt like a natural thing that I wanted to do. Yes, I was unhappy, devastated in fact, whenever I messed up socially (alas, a frequent occurrence) but it was me who wanted to learn how to improve my social communication.

I noticed signs of masked autism in Milly, who was 2 at the time, and succeeded in getting her autism diagnosed, despite her nursery manager and senior health visitor firmly opining that she was no way autistic (they knew all about autism) and that she was just shy.

I came across PDA at the time of Milly’s formal assessment in 2015. I realised PDA described essential parts of me that autism alone did not.

In meeting adult PDAers online - the only resource at this time for adult PDA was a Facebook group run by fellow PDAer Julia Daunt - I found I connected instantly with the community. I had never before integrated this well anywhere.

Following hundreds of hours of online chatting, both with PDAers and general autistics, I picked up that PDAers seemed more likely to consider masking to be natural, and less likely to think badly of it.
However, nearly all general autistics I spoke with, as well as a few PDAers, saw masking as an evil thing brutally forced onto them by unaccepting parents and society. They described it as exhausting, and unhealthy; unnatural. Many talked of having liberated themselves by dropping their masks.






This intrigued me, so I ran an informal study, which backed up my supposition that PDAers are more likely to see their masking as natural. I spoke to Grace Trundle, a forensic psychology PhD student from Nottingham University specialising in adult PDA.

She explored this through formal research. Her findings did suggest that PDAers carry out more social mimicry and masking than general autistics.

I believe there is much more to be explored with regard to PDA, and general autistic, masking, and am excited to say that I will be working with Grace in future to carry out more, formal research.

In the meantime, there is, I think, likelihood that many PDAers have an instinct to mask, as opposed to many non-PDA autistics who only mask if coerced to do so, and feel miserably oppressed as a result.
Now, I think there’s a very important point to bear in mind here: while autistic children might appreciate being told they can express themselves as they wish; the same message may confuse a PDA child
I want to reiterate that not all PDA, and general autistic children are the same. Far from it! But there does seem to be evidence that a significant proportion of PDAers mask, and believe this a natural thing to do; and that this differs from what general autistic people have reported

My daughter, for example, communicated to us, her parents, from the moment she could do so (about 2-years-old) that she was OK, when she very clearly wasn’t. On one occasion, for example, she had tried and bashed her head against the door frame. She had a gash on her forehead and tears streaming down her face. We rushed to comfort her, but this caused her to panic and insist that she was OK. We didn’t want to panic her, and wanted to agree with her; to say “oh good, you’re OK”, but we also wanted to comfort her for the physical pain she was adamantly denying. It was very hard to parent!
I resorted to holding my arms wide for her and sitting calmly so she could choose to come for a cuddle; which she did.

Now, in case you’re wondering, we never reacted negatively to our daughter for crying and expressing pain. Her desire to mask it appears to have been a natural instinct.

I had a conversation with her about this a couple of weeks ago as it happens. She’s now 9.  I told her about how she used to say she was OK after painful toddler injuries, when she clearly wasn’t, and how it had been very hard to respond to her, because we’d wanted to comfort her. She thought this was funny. We’d got to talking about how we both hide if we are hurt. We shared stories of childhood injuries we’d tried to conceal.
One story I told her about a time n the school playground when  was about six, and ate a square-shaped chewy sweet which got stuck in my throat, with the corners digging in so it really hurt and I could hardly breathe, but I did all I could to behave as if I was fine. I have no idea why.
A story she told me was of falling over in the playground when she was in year one and cutting her knee badly. She pulled her sock up over it to hide it, but the sock went dark with blood, so she kept her skirt pulled down low.
She told me that on an other occasion, this time in her garden, she fell into something and bashed her face, and her nose started bleeding. She sneaked upstairs and hid under her bed. She told me there’s still a dark patch of blood on the carpet there.
I asked her if she knew why she did this. She shrugged her shoulders and speculated that maybe it was because she didn’t want the attention. I said, “I’ve been wandering about masking. I think we discussed this before? It’s where some people, such as myself, want to hide what we feel and look calm and happy…” She cut me off, and said, “It’s definitely that!”

So, the type of masking we do, myself and Milly that is, is driven by not wanting other people to know or see what we really feel.
If a well-meaning teacher came up to Milly and told her they could tell she was masking, and doesn’t have to do it, she would total panic, and be upset that her masking had been spotted, and confused by the teacher telling her she could just stop doing it.

I’ll now describe to you a bit more of what my masking and social mimicry feel like to me.
My experience may not match everyone else’s, but I hope it shines some light onto what PDA masking can feel like.

I’ll also be exploring the positive side of masking.
I personally do not see masking as a bad thing at all.
I see it as natural, helpful and sometimes great fun :D

But before the fun, comes what I call the fear wall.
The fear wall is not fun at all.
It is a horrible, paralysing bubble of terror that leaps up to engulf me when I want to speak to people. I’ve been cursed with the fear wall since I was a very small child.
I never wanted it, nor knew how to make it go away.
It meant I couldn’t talk easily to people, even though I longed to.

I remember as a nervous, young adult with low-self-esteem, being lonely and depressed because of it. There were only ever a few people at any one time who I could talk to easily. My fear wall blocked me from communicating with everyone else.
However, it wasn’t always possible to see the few people I was comfortable with, and loneliness would set in.
This was often a panicked loneliness too.
I used to be terrified of being alone.
Sometimes I summoned  the resolve to expand my social circle and visit someone who wasn’t one of my safe people (the two or three people I was relaxed with).
I chose people I’d been able to talk to with relative ease in the company of one of my safe people.
I’d bravely arrange to meet this person, determined to overcome the paralysis of my fear wall, but - every time - my fear wall clamped down on me, leaving me panicked and scarce able to speak. I’d sit there awkwardly, wishing very hard that I was happy and relaxed and able to enjoy their company. But I couldn’t. It was excruciating. Very disappointing too.
I wanted to say and do the right thing, but I had no confidence in myself to know what what these things were.
There was one friendly girl, a bit older than me, who’d I’d known since my teens. I often walked with her up a hill - I’m pretty sure we did more than this! but this is what I recall. Every time, I found myself saying, “it’s a long hill!” Then instantly regretted having parroted myself from every other time we’d walked together up that same hill.
I wanted to talk freely and spontaneously, but, well, couldn’t.

Now let’s look at how masking has been able to rescue me.
I’ve gradually picked up, here and there, throughout my life, phrases; mannerisms, expressions and other snippets of social communication, that people appeared to respond well to.
I’ve never been good at small talk, but my scavenged communication toolkit has given me confidence that I can hold my own socially *enough* to permeate my fear wall, so that I could - as was my desire - interact with others.

How great is that?!



Now, some people view masking as shady and dishonest. After all, it entails hiding one’s true feeling behind a calm, happy front.
However, for me, masking enables me to break through my cursed fear wall and communicate (full stop).
And I do actually seek to communicate my true feelings.
It’s an odd one - I’ve become aware of this as I’ve searched for the words to describe how masking works for me - My masking enables me to communicate deep, genuine feelings that I could not otherwise describe. At all.

I’m trained as a person-centred counsellor
What I relished most in this training was being taught how to actively listen and communicate empathy; and having specialist tutor feedback about how I came across.
This was perfect for me.
I was also highly encouraged to be informed my self-awareness is well-developed.
I failed to pop out the end of the training schedule as a working counsellor. I got as far as the first term of level 4 (now permitted to call myself a qualified person-centred counsellor) and quit because of health and PDA avoidance issues,
But the social communication skills I’d Iearned have been a massive boost to me, and completely transferable into every day life.
My ability to mask broadly, so as to communicate with most people I meet with relative ease has been massively boosted by this training.

And, as I mentioned earlier, masking can be a very pleasant thing to do.
For example, we had a family holiday to Rabat in Morocco a couple of years ago. Rabat is not a touristic place, and I was ultra conscious of it being a deeply Islamic community in which women are required to be demure and keep their bodies covered. Dressed conscientiously, I sought to deport myself in a demure manner. Although this might sound like the antithesis of the freedom PDAers need, I actually had great fun stretching my wings into this new mask. It felt liberating and deeply satisfying.

I think the PDA traits of being comfortable in role-play, and liking novelty came into play here.
So, in this light, masking can perhaps be thought of as an aspect of the PDA trait of liking role-play… or is it the other way round?


Friday, March 6, 2020

The importance of undiagnosed adult PDAer voices

(Originally posted on the Free PDA blog)

A disturbing stance is emerging within the PDA community that undiagnosed adult PDAer voices are invalid. I am writing this blog post, with passion, to counter this negativity, which I see as discriminatorily ableist and destructive.

What is PDA?
PDA, which stands for pathological demand avoidance, is a neurotype that is classed as an autism spectrum condition because it entails social communication differences & rigid thinking. In addition to this, PDA also involves strong control-need; anxiety; intolerance of uncertainty; tendency towards fantasy & role-play; disregard for hierarchy & rules; obsessive interests often focused on people; ‘Jekyll and Hyde’ emotions, and impulsiveness.




My personal journey

I first learned of PDA in 2015, eighteen months after gaining an adult autism diagnosis. At this time, Googling “PDA” returned results about difficult children, and nothing at all about adults. I resorted to searching Facebook and found just one group dedicated to adult PDA: Julia Daunt’s Adult PDA Support Network. I was blown away to find, for the first time in my life, that I connected easily with a community. There were countless “me too!” moments voiced not just by me, but by many fellow members. I’d not experienced this anywhere else (including in  general autism groups). It was incredible. We, everyone of us, had spent our lives as anxious misfits unable to comprehend and articulate why it was that we couldn’t just *do* as those around us did; why we couldn’t just get on and flourish in careers; in home lives; in every f**king thing we were confronted with. However, in addition to our disablement, I also learned that we shared creativity, wit, compassion, bolshiness and excellent verbal ability.



I learned also that, like myself, 99% of members were not formally diagnosed. PDA can be diagnosed as a behavioural description of autism, but few assessment centres will do so. While some lack PDA awareness, others actively refute PDA's existence. A few private assessors will diagnose it, but the cost is prohibitive for most of us. Of all neurogroups, PDAers seem to have the biggest barriers against earning a wage. This was highlighted in the results of a cross-neurogroup traits study I ran in 2016: you can read about it here. I’ll describe the broader study in the next session.

Lack of diagnostic access and prevailing ignorance about adult PDA were sore points within the online community. The feeling I picked up was frustrated futility. Although we strongly felt we’d found our herd; that PDA explained who we were after life times of failing to fit our own expectations, the rest of the world was blind and deaf. Ignorance towards adult PDA was absolute. Health professionals folded their arms and told us to move on. Researchers focused on children only. Theorists described PDA from the researchers' child-focused, observer-driven findings. Even parents of PDA children failed to compute our existence. Facebook at this time had a range of PDA support groups, but all (bar Julia Daunt’s) served to support parents of PDA children. If adult PDAers voiced opinions in these groups, we were shouted down. No value was placed on our lived experiences. Even today, it seems not to have occurred to members and admins that, instead of being called PDA Support groups, they should be described as support groups for parents of PDA children. Thankfully, PDA Society became aware of this omission: having operated solely as a parent support service, they switched gears in 2018 to include support for adult PDAers.




Peer research

Going back to 2016, I felt a burning drive for adult PDA to be acknowledged and understood. Wowed by the plethora of shared ‘me too!’ moments, I instigated a big peer study which sought to pinpoint shared traits. I then asked PDAers and general autistics to rate how they felt each trait applied to themselves. It goes without saying that the vast majority of PDAer participants had no PDA diagnosis.

Grace Trundle, a doctorate student from University of Nottingham’s Centre for Forensic and Family Psychology, specialising in PDA, ran a T-test analysis on the data in 2019. She found that, of the 155 traits, PDAers scored significantly higher than general autistics for 105. You can see her T-test analysis here, and read more about my study here. In summary, a multitude of significant differences between PDA and general autism were revealed. Samples are:

  • I don’t respond to social status or age in the way I interact with people.
  • I am imaginative/creative.
  • I make up new names for people.   
  • I hate being ignored.   
  • I feel a need to be in control.
  • I can't cope with being told what to do.
  • I can't cope with being an employee unless given a lot of authority and/or autonomy.
  • I have my own set of ethics that do not necessarily correspond to society's, the law, etc.
  • I may leap to the rescue of a person or animal being abused.

The above sample of nine traits paint PDAers as creative; people-focused; needing a lot of autonomy; and champions of justice.





PDA by PDAers
My passion to communicate the global adult PDA community’s synergy inspired me to compile the first published book about adult PDA, PDA by PDAers. This book, like the big traits study, is based in enabling diverse adult PDAer voices to be heard, as it is compiled from contributions given by over 70 adults. I say in the introduction:

“No single one of us is more PDA than any other. There is, in my opinion, no ‘pure’ form of PDA. We are PDA, adhering to a certain pattern, in our own unique ways. To me, this collective description provides a broader glimpse of the adult PDA whole than can be provided by a single PDA individual”

PDA by PDAers was published by JKP in 2018; the same year that PDA Society added adult provision to their remit. A great year for adult PDA!

Feedback for the book has been astounding. Individuals and parents have excitedly told me that its content describes them or their diagnosed PDA child in uncanny and unsuspected depths: depths not described in the standard texts about PDA (derived from researchers’ observations of children).

It felt very clear that our combined adult PDAer voices provide important insight into the reality of PDA, that can inform individuals, parents and professionals alike. The adult PDA community, which is 99% undiagnosed, is therefore something I hold in high esteem, but protectively. I am all too aware that we are a minority group whom few have championed, and the majority (including service providers) have totally dismissed. I have never, however put myself forward as a representative of the adult PDA community, because I am very aware that PDAers are fiercely autonomous and resistant to hierarchy. Instead, I see my role as a peer advocate focused on facilitating all voices being heard.





Criticism
Then came the discriminatory attack on the adult PDA community that prompted me to write this blog; and, in fact, co-found the Free PDA initiative. The attack runs thus:

The views of the adult PDA community are invalid because most members are not diagnosed. Further, listening to the adult PDA community is dangerous because their undiagnosed opinions may give a false impression of what PDA is. Undiagnosed adults should therefore be barred from participating in research studies.

Now, while this argument raises the valid point that self-identifying PDAers may not in fact be PDA at all, to my mind it misses several key points:

  • PDA understanding is still in its infancy. No one, including top notch researchers and theorists have a full understanding of what PDA, and neurodiversity in general, actually is.
  • People who actually are diagnosed as PDA, may in reality be misdiagnosed
  • Academic research cannot move forward swiftly without guidance from 'experts by experience’ (I’ll be talking about this in more detail in the next section).

In addition, this exclusive attitude – that only diagnosed PDAers should be permitted voices – is highly ableist and discriminatory. As it stands, only people who are rich or extremely lucky can access assessment for PDA.

As we have seen, the combined voices of the adult PDA community have already proven their validity in that parents of diagnosed PDA children not only connect to our reported experiences, but are enabled to understand their children more fully.

Trying to silence us would therefore cause much more harm than potential good.




Undiagnosed PDA voices informing formal PDA research
Furthermore, positive results I gained from peer research into neurotype differences in social mimicry and masking alerted Grace Trundle to carry out formal research in 2019. Grace presented her findings at a conference I co-organised with Spectrum Savvy and Julia Daunt in Bristol in February 2020. Excitingly, her findings confirmed what I had found through peer research: PDAers carry out more social mimicry and masking than general autistics.


Grace Trundle at Valuing Adult PDAers' Voices conference in Bristol Central on 11th February 2020


She elaborated:

"What I research is often not my lived experience. This means my understanding of a topic only reaches a certain level. I can read all the research, I can speak to individuals with the population I’m studying, but I will never truly understand what is it like to live with a condition or an experience. And this limits my ability to conduct research that benefits the population.

An Expert by Experience is an individual who has personal involvement with services, conditions, or specific experiences... Those with experience of [a condition] ethically should have a say in research that is about them and has an impact on them, but also because involving those from the target population in the research design may help ensure that the study is conducted ethically and sensitively. This may include the terminology that is used which can often be the topic of debate.

Another argument is that research is often supported through public funding and so it can be argued that the public should have some influence over it (Thompson et al., 2009).

Due to their expertise, they may provide new insights that have not yet come to the attention of the researchers

My experience of working with adult PDAers thus far has demonstrated many benefits:

By working with adult PDAers, who are experts by experience, I have gained a unique and often humorous insight into the world of PDA

We can draw each others attention to how things are perceived from different perspectives – providing each other with new information

We can promote the doing with rather than doing on approach and I can experience the benefits of this type of approach

We can develop a mutual respect for the expertise of each other

As researchers, we are still learning about PDA, especially PDA in adults. With so much unknown or unanswered at present, it would be useful to involve the PDA community in developing research ideas. I am unaware of whether this is currently happening, but reflecting on my thesis experience, the idea was influenced and somewhat generated by consideration of expert by experience reflections and reports."

Monday, December 2, 2019

"Pathological demand avoidance" or needing to be free?

"Pathological demand avoidance" (PDA) is the name of a life-long neurological condition.


The term was coined by Professor Elizabeth Newson, who first identified the condition in the 1980s.
In addition to the trait of pathological demand avoidance, PDA entails:
High anxiety, control-need, use of social strategies, sociability, mood swings, comfort in fantasy & role-play and obsessive, often people-focused behaviour (link). 
And also:
Disregard for social hierarchy, masking, love of novelty, dislike of routine, intolerance of uncertainty, creativity, quirky sense of humour, and (not always) a drive to rename people, animals and things.
PDA Classification
PDA was initially classed as a pervasive development disorder, but reclassified as an autism spectrum condition after the spectrum's definition was broadened in 2012 to include any neurotype featuring social communication differences and rigid thinking. You can read more about the history of PDA and its classification. There is further information about the history of PDA on PDA Society's website (link).

Contention within the PDA community over the condition's name
The name "pathological demand avoidance" is, however, contentious amongst adult PDAers:
  • Some are fine with it.
  • Some hate the term "pathological".
  • Some believe this name misrepresents the condition.
For my own part, I started off fine with the name, but have since come to question it's appropriateness. I'll explore the three stances (the name's OK; the "pathological" part of it is bad; and the whole of it is misleading) in this blog post, which includes comments from fellow PDAers (quoted with their consent).

1) Those who are fine with the name
Some of us argue that "pathological demand avoidance" is an apt name for our condition. They say that changing the name would take away the small amount of recognition PDA has so far achieved. Furthermore, PDA Society would have to change their name.

Julia Daunt, a PDA advocate, who's PDA was diagnosed by Professor Elizabeth Newson when she was a child, says: 
The name is the name. End of. No debate to be had in my opinion. To change the name would cause a backwards step and would create confusion. It would also be disrespectful to Liz [Newson] in my opinion. 

Also Pathological covers it perfectly. People need to stop being silly over the name and focus on the bigger picture - raising awareness!
Fellow adult PDAer and advocate Riko Ryuki says simply:
I agree with Julia
2) Those who hate the term "pathological"
Other members of the PDA community are strongly opposed to the term "pathological" because of its negative connutations, and refuse to have the label applied either to themselves or to their children.

The alternative name "extreme demand avoidance" was put forward as a more acceptable term (link) and promoted by researcher Liz O'Nions who developed the EDAQ (extreme demand avoidance questionnaire) to measure PDA traits in 2013 (link). Some PDAers, such as Kamala McDaid prefer this:
I prefer “extreme demand avoidance” in some ways because some people think “pathological" means that it’s a mental health condition/illness which ASD and all it subtypes aren’t, so changing the name would stop those people thinking that we were “mad in some way ”
The alternative term "EDA" has, however, been vehemently rejected by other adult PDAers. Some, myself included, argue that "extreme" gives the impression of a lifestyle choice (like enjoying extreme sports) and fails to convey the hard-wired, involuntary nature of our avoidance. Jenny muses:
I don't like EDA either I'm afraid. But I agree the word pathological is bad. It's like 'personality disorder', a horrible term.
Others, such as Carrie Prior are attached to the acronym PDA, but not the word "pathological":
I dislike the word Pathological, as it tends to be negatively associated with the term Pathological Liar, something that PDA-ers are definitely not. 
 Kamala McDaid, echoing Julia Daunt, goes on to say:
But as PDA is a LOT more than just demand avoidance, and in someways the demand avoidance is a “symptom" of our anxiety and need for control, EDA still doesn’t explain the condition any better than PDA, but I am not sure of what could be an alternative and at least PDA is starting to be recognised by experts, professionals and the public and a name change might undo some of the great work already done by advocates and those with the condition, and delay the understanding and acceptance by the majority that we need.
Adult PDA blogger, Emily Wilding, muses in a post entitled what is demand avoidance and when is it pathological?:
Pathological. I know it sounds awful, and it does because we associate it with things being wrong or diseased in some way, and it can mean this. But pathological also means "being such to a degree that is extreme, excessive, or markedly abnormal" (Merriam-Webster Dictionary). It simply means in this case that the demand avoidance is atypical. Whilst I don't like the fact that the PDA neurotype is named after the demand avoidance that is experienced by the PDAer, I do agree that the demand avoidance experienced in PDA is extreme, excessive and completely different in nature to other demand avoidance, which is where the huge misunderstanding comes.
3) Those who believe the name misrepresents the condition.
In the quote above, Emily Wilding expresses ill-ease at our neurotype being named only for our avoidance. It can be argued that the phrase "pathological demand avoidance" is misleading because it names only one of a range of traits associated with PDA. For example:
Elisa: My concern is mainly that the pathological demand avoidance part of PDA is just one part of something much greater and more complex, and also that it is the most negative part. It doesn't sit right with me that the name should be that. Unfairly named.

As for pathological, I get the meaning, so for me it isn't an issue, but it is perceived as a very negative term, which is the last thing we need, as PDA people are already viewed as difficult.
Many members of the wider autism community argue that PDA does not merit distinction as a subtype within the autism spectrum because all autistics can be demand avoidant. I believe that our condition being named for the trait of avoidance only, coupled with its autism spectrum classification, has caused much of this confusion. Emily Wilding provides a detailed examination of PDA versus general neurodivergent avoidance in her blog post.


So what else to call it?
As  PDAers have a high need for personal control, are creative, and often driven to invent new names, it should come as small surprise that alternative names for PDA are frequently proposed by members of the community. Here are a few:

John Cannon: 
"let me say no first, then go away for an hour and think about what you have just asked me" syndrome.
Carrie Prior:
Ironically, I do actually like the acronym PDA; if only there was a more positive word beginning with P that could better sum up the demand-avoidant profiled person in a more inclusive way. 
Jenny:
Something to do with personal autonomy?
I like autonomy driven profile! 
Emily Wilding:
Pervasive Drive for Autonomy
Jessica Fox: 
I agree with Emily Wilding. Pervasive Drive for Autonomy, or even Pervasively Driven Autonomy, is a much better holistic descriptor of the neurotype than focusing on just one aspect of the reaction to the triggers of demands in an authoritarian society that prizes the following of arbitrary rules and commands. 
Louise Burrell:
"Pressure Detonation Anxiety" was the best I could come up with, but it doesn't come close to describing what PDA really is. I love Pervasive Drive for Autonomy, Emily's one, above (and the piece about it). Also, Protective Demand Avoidance was another good one (can't remember who penned it). 
Having said that, "Pathological" is a bit useful for distinguishing between PDA and other types of demand avoidance. Something about it really validates just how widespread and significant the DA is. People really seem to struggle to understand and believe that it is much more than not wanting to do an unpleasant task
Elisa:
I like Pervasive Drive for Autonomy. Autonomy is as important as air for me to survive.
Emily Wilding:
I do agree that our demand avoidance continue to be referred to as pathological, just not the whole neurotype described for this one attribute.

I personally agree with Julia Daunt, Riko and Kamala that changing the name of our condition would erode the limited awareness our condition has managed to gain. I do, however, accept that the term "pathological" is alienating for many, and this cannot be good for acceptance and respect. Like Carrie Prior (and many others I've spoken with) I am personally attached to the acronym "PDA." I identify with those three syllables without spending time pondering what each letter stands for: In my heart I'm a PDAer (not a pathological demand avoider). I also see that naming our condition for just one, negative trait is detrimental to PDA awareness and acceptance: many assume that PDA comprises demand avoidance and autism only. So might it be viable to hope for an officially-endorsed rebranding of our condition from "pathological demand avoidance" to a new term sharing the same initials, perhaps "pervasive drive for autonomy" (as Emily Wilding suggested)? This leads me to the question of who, if anyone, is actually in control of our condition's name? As far as I'm aware, the authorities here are PDA Society, National Autistic Society and various PDA-focussed professionals/researchers such as Phil Christie and Liz O'Nions. All of the above are, I believe, receptive to the views of the adult PDA community, so the possibilty of changing our condition's name seems achievable. The main hurdle I foresee comes, in fact, from my fellow adult PDAers, who will likely feel continually driven to contest each and every name for our condition! I truly love the free-thinking, personal control-needing, name-inventing, label-hating creativity of PDA. 

 

Sunday, June 23, 2019

A Demonstration of Differences Between PDA and Non-PDA Autism

Transcript of my presentation at The Autism Show at ExCeL London on 15th June 2019.




Hello, I’m Sally Cat I am a PDAer

This means my neurology fits the Pathological Demand Avoidance profile, which is currently classed as an Autism Spectrum Condition 

PDA is much more than the eponymous demand avoidance 
 
The data I'm presenting is from a large study I ran in 2016 which compares the ranking of 155 potential distinct PDA traits between PDA and non-PDA autistic respondents 

These 155 traits were whittled down from a prelimina 228 suggested by members of the adult PDA community via a preliminary in-group study 


My role was coordinator, rather than leader (more PDA-friendly, as we none of us like to be led) 

I am not a trained researcher 

My interest was, and is, bottom up: a member of the adult PDA community seeking answers in the face of academic ignorance towards adult PDA 

Being an enthusiastic amateur (and pathologically avoidant) I did not seek ethical approval for the study 

What I did achieve was to galvanise 90 non-PDA autistics and a whopping 290 PDA adults to participate 

I should point out that nearly 100% of these PDAers were (and still are) self-diagnosed. This is because gaining adult PDA diagnoses is almost as impossible as kissing one’s own elbow

Please, though, do not assume that we self-diagnosed PDA adults have applied the PDA label to ourselves without self-reflection or thought. The fellow PDA adults I have come to know via Facebook are the most soul-searching group I have ever had the good fortune to meet. 


The resulting spreadsheet was so daunting to me that I sat on it for three years incapacitated by demand avoidance-generated dread 

Happily, Nottingham University Forensic Psychology PhD student, Grace Trundle, kindly carried out a T-test analysis on the raw data earlier this year 

Her findings were even more dramatic than my untrained eye had guesstimated 

I shall now try my damnedest to present this vast number of statistics in a manner that is not only digestible but interesting 

(Please feel free to wish me luck!) 



The scale of proportions will demonstrate the comparative proportions of:
  • traits showing no significant difference between “ASD” (non-PDA autistics) + PDA
and
  • traits where the PDA group scored significantly higher than the “ASD” group 




 
Looking first at the total 155 results, we can see that there more than twice as many significant differences between the PDA group and non-PDA autistics than there were similarities: that is, 105 compared to 50 



 
The first batch of traits I’m going to show you are demand avoidance ones 

There are 14 traits all together, which I don’t have time to read through (I only have a half hour slot here) 

So I’ll read you this sample couple:
  • I avoid even potentially pleasurable and advantageous activities because of innate anxiety and demands.
  • I don’t pay bills on time even when I have the money 

How do you think these 14 demand avoidance traits rank on the scale of proportions? How many will show a significant difference for the PDA group? Lay your bets now! 



And it is a full house for the PDA group: PDA has no similarities with the non-PDA autistic group for the fourteen demand avoidance traits


 


I’ll be slotting this Traits View-anometer graphic into my presentation periodically to keep track of how far we’ve travelled through the 155 traits

As you can see, we have currently viewed 14 of them, and have 141 remaining 


Remember all the traits in this study were suggested by members of the adult PDA community. I did not edit their wording, though did contribute to some of it. 




 
The next traits batch is anxiety ones, of which there are 9

I again don’t have time to read through every trait (you can see them here on the right of the screen) 


The two sample traits I’ve picked out for your perusal are:
  • I have self-medicated to reduce anxiety.
     
  • I feel anxiety over making social mistakes 

So lay your bets now: what will the scale of proportions reveal? 



And it’s another full house!

PDA has no similarities with the non-PDA autistic group for the nine anxiety traits 






Next up, we have social traits, of which there are 20 

The two samples I’ve picked out are: 
  • I want to get on with people, but I never know what to say.
  • I copy tone of voice and accents, trying to 'fit in' to social circles.

What will the
scale of proportions reveal? Will it be another full house for the PDA camp? 



Not a full house!

PDA has 2 more similarities with the non-PDA autistic group than significant differences




 
The Traits View-anometer is telling us we have now seen 43 of the 155 traits: 112 remain. 


So 2 of the 3 traits groups we’ve looked at so far have been full houses! 

However, these were demand avoidance and anxiety: traits associated with PDA, so it’s not perhaps surprising that these showed a significant difference. 

I think, however, that you’ll find some surprising differences revealed a little later on... Let’s continue 



 
Next up, we have 8 attachment & focus traits The sample traits descriptions are:
  • I develop very strong, passionate interests. 
  • I have had/have obsessions about people.

So, what will
scale of proportions reveal? Lay your bets now. 






It’s not a full house, but PDA has 2 more significant differences than similarities with the non- PDA autistic group





The next group is Freezing, Shutdown, Overload and Jekyll & Hyde Behaviour x 4 Sample traits are:
  • I have had/have Jekyll and Hyde behaviour.
  • I am frequently overloaded. 

Will it be a full house? What do you think?



 
It is a full house! 

This is our third one: three out of the five groups we’ve looked at so far have shown no similarities with the non-PDA autistic group 





Here’s the Traits View-anometer again: we have exactly 100 traits left to view.





INTERMISSION 

I don’t know about you, but I’m feeling a bit exhausted from all this dry data, so I feel it’s time for a short intermission. 

My PDA demand avoidance tends to push me to avoid following straight, predictable lines, and I have felt compelled to break my presentation up a bit 

PDA me is now both relieved and socially anxious that you, my audience will judge my deviation from the norm harshly: that Sally Cat has gone unnecessarily weird! 

However, as I’ve already written my script (I prefer to follow a script because of my slow on the fly processing speed, and tendency to veer off on tangents... as I have done now, but I’ve planned this, so it’s OK; I hope)



 
Let’s consider for a moment what motivated me to carry out this big traits study. 

When I discovered PDA in 2015, I could find no information about adult PDA via Google, and resorted to searching for Facebook groups. Just one adult PDA group existed at this time: the Adult PDA Support Network, which had been founded a few years before by adult PDAer Julia Daunt
I found I fitted into this community instantly; better than I had ever fitted anywhere else (including with general autism groups). 

And it wasn’t just me: countless fellow group members spontaneously commented that they too felt they fitted in better here than anywhere else. 

The huge number of “me too!” moments inspired me to coordinate the traits study I am presenting data from today 

No one else had looked into adult PDA

Four years on, and there has still been hardly any research carried out into adult PDA What I am presenting today is, therefore, pioneering 


I am aware that my study can be criticised for it’s lack of ethics, and, I dare say, countless other niceties that I omitted, but what I believe I have achieved is a bold demonstration of how the PDA profile is distinct from general non-PDA autism 





So let’s get back to the nitty gritty: 

Next up in the traits train we have 6 early years traits (remember, every trait was suggested by members of the adult PDA community) 

The sample traits I’ve picked out here are:
  • As a child, I had difficulty getting along with children of a similar age. 
  • I understood fairness from an early age. 

Will this be our 4th full house? Let’s find out





No, it’s not a full house. PDA has 2 more similarities with the non-PDA autism group than significant differences





Fantasy and role-play traits. There are 3 of these.

As there are only 3 traits in this group, I have highlighted all of them:

  • I used to daydream a lot as a child.
  • I had a rich fantasy world, which I preferred to reality I enjoy role play, comedy and accents. 

What will the scale of proportions reveal?


 
PDA has 1 more significant difference than similarities with the non-PDA autistic group 





School traits. There are 4 of these

Examples are:

  • I felt like an outcast at school.
  • My academic attainment has not been a true indication of my intellectual ability. 

How will this traits cluster weigh in on the scale of proportions?





It’s a tie: PDA has an equal number of significant differences as similarities with the non-PDA autistic group





We now have 12 verbal traits. I like this set!

Sample traits are:

  • I need to understand the author’s intent or meaning. I can't gloss over things. I will re-read to be sure I got it. 
  • I make up new names for people.

So how will these 12 traits score on the
scale of proportions?





It’s another draw! PDA has an equal number of significant differences as similarities with the non-PDA autistic group. 

Although this group didn't show a full house for the PDA group, I'll explain why I like it so much after we quickly view the Traits View-anometer again...




Here’s the Traits View-anometer again: it’s telling us we’re over halfway through this demonstration of differences between PDA and non-PDA autism 





An interesting aside here is that none of us had thought of renaming people and things as a PDA thing until chatting about it in the Facebook adult PDA group. I myself at the time felt compelled, for no apparent reason, to call everyone Susan! 

I am hoping that this PDA trait can be named "Susanisms"! 

I should point out that, in looking at the histogram spread of the PDA responses to these questions, approximately half of the respondents hadn't actually scored themselves highly: meaning that those who did score themselves highly for renaming people and things scored themselves very highly. 

When I shared this research in a PDA Facebook group a few months ago, a parent of a PDA girl told me that the child’s assessor knew she’d be PDA as soon as he read in her case notes that she likes renaming people and things. This assessor, i was told, had worked alongside Elizabeth Newson (“discoverer” of PDA) and had come to recognise this trait with experience, rather than it having been formally recognised by theorists.





The next section has the snappy title of “co-occurring neurological conditions and health issues”. 

There are 6 of these traits. 

The sample traits I’ve selected are:
  • I have had/have depression.
  • I have irregular eating habits

How will these score on the
scale of proportions?





It’s another draw! The third in a row. PDA has an equal number of significant differences as similarities with the non-PDA autistic group


 
The next batch is emotional lability, of which there are 6 traits. 

The two samples I’ve picked out are:
  • When unsupported, my anxiety, hyper-emotionality and social alienation has escalated to mirror recurrent depressive disorder or borderline, narcissistic or dissocial personality disorder.
  • I have had/have over the top seeming emotional reactions. 

So how do you think the emotional lability traits will score on the scale of proportions? Will it be the 4th draw in a row?



It’s a full house! PDA has no similarities with the non-PDA autistic group for the six emotional lability traits 



Social and family communication: there are 7 traits in this group The two sample quotes I’ve selected are:
  • I want to please people. 
  • People misunderstand my friendly sarcasm and are sometimes upset.

How will these social and family communication traits weigh on the scale of proportions?





It’s not a full house, but it’s not a draw either: PDA has 3 more significant differences than similarities with the non-PDA autistic group





We now have 7 social justice and empathy traits The sample traits are:
  • I am empathic (feel empathy).
  • I may leap to the rescue of a person or animal being abused. 
What will the scale of proportions reveal for this group?


 
PDA has 1 more similarity with the non-PDA autism group than significant differences



Our next batch (and I have another intermission scheduled for after this batch) is control-need traits. 
There are 9 of these 

The sample pair I’ve selected are:
  • I feel a need to be in control.
  • I can’t cope with being told what to do.

How will these control-need traits weigh in on the scale of proportions?





Full house! PDA has no similarities with the non-PDA autistic group for the nine control-need traits





Here’s the Traits View-anometer again: telling us we have seen 114 of the 155 traits 

Don’t forget that all these traits are from a big study I coordinated with fellow PDA adults 3 years ago.


 
Time, I think for another short intermission to take a break from all these statistics. 

Why is it that some people who are not PDA (be they non-PDA autistics or neurotypical academics like Professor Jonathan Greene) are hellbent on disproving the validity of the PDA label? 

They argue that PDA is nothing more than a stress reaction which all autistics can experience
 
And that those of us who identify as PDA are deluded 

We, the PDA community, feel both attacked and mystified 

Why are some people determined to disprove the reality of our condition; a condition which we clearly and absolutely identify with? 

I say it is because, until very recently, we adult PDAers had no platform from which our voices could be heard 

As I have said, I found zero information about adult PDA four years ago when I first explored the condition 

We, the adult PDA community, have not until recently stepped forward to say, “oi! Here we are. We’re PDA and proud of it. It is our identity!” 

No wonder non-PDAers have assumed PDA is an unnecessary label. 





Back to the T-test analysis of the big traits study I carried out in 2016. The next group is of 6 thinking-style traits 

Examples of these are:
  • I think literally. 
  • I can come up with unconventional solutions that surprise people.

So on again to the scale of proportions to see how this traits batch weighs in.





It’s a draw! PDA has an equal number of significant differences as similarities with the non-PDA autistic group





We now have 5 cognitive traits; ones covering perception of intelligence: both internal (how we judge ourselves), and external: how others judge us 

Sample traits are:
  • I am intelligent.
  • My intelligence has gotten in the way of professionals spotting my problems. 

 How will these five traits score on the scale of proportions?


 
Only one significant difference: PDA has 3 more similarities with the non-PDA autism group than significant differences 




I feel a mini break coming up, but let’s first take a quick look at the 2 social manipulation traits These two traits are:
  • I get confused as to why people tell me I am manipulative. 
  • I can be charming.

What will the scale of proportions reveal?


 
It’s a full house again: PDA has no similarities with the non-PDA autistic group for the two social manipulation traits 





Here’s the Traits View-anometer again: we have seen 127of the 155 traits. There are just 28 remaining 

Don’t forget that all these traits are from a big study I coordinated with fellow PDA adultsin 2016.



 
Time for another brief interlude, this one about PDA charm and social manipulation. 

National Autistic Society say of PDA avoidance that we PDAers seem to have, “enough social understanding to adapt their strategies to the person making the demand. Parents very often use the term 'manipulative' to describe this aspect of their child's behaviour and will comment on how it seems to be their greatest skill” 

Am I manipulative?

I have never thought of myself as such, but I have been accused of being so. This has baffled me. 





Social interaction has always been a puzzle to me. I have repeatedly failed at it, which has caused me massive upset and confusion. 

I have always wanted to get on with others, even though they often irritate me! 

And there have been many things I’ve felt a burning, emotionally labile need to possess, which other people have held the keys too (sometimes literally, as in the case of prospective landlords). 

And then there has been my unceasing drive to avoid demands. I don’t do this so much now, but I have tried to palm things off on others in order to achieve this. 

I have used charm and social mimicry in my efforts succeed in such interactions, but I have often made mistakes. 

One such mistake, I think, is inadvertently coming across as manipulative.

Do I feel like a social manipulator?


No, I do not.


I feel like a blind minnow trying to navigate a competitive ocean trying to survive as best I can





The next traits set are ones involving interest in psychology and ethics. There are 4 of these. Sample traits are:
  • I have an interest in psychology.
  • I have my own set of ethics that do not necessarily correspond to society's, the law, etc.

What will the scale of proportions tell us about this set?


 
And it’s a draw: PDA has an equal number of significant differences as similarities with the non- PDA autistic group 





The next batch are humour traits.

There are just two of these, so I’ll read them both out:

  • I am prone to hyper behaviour/silliness.
  • I have a fantastic sense of humour.

How will these two traits weigh on the scale of proportions?





It’s a full house! PDA has no similarities with the non-PDA autistic group for the two humour traits





The next traits, just 2 of them again, are creativity and imagination ones:
  • I am imaginative/creative.
     
  • I experience vivid dreams. 

Let’s look at the the scale of proportions





It’s a full house again! PDA has no similarities with the non-PDA autistic group for the two creativity and imagination traits





The next traits group is impulsiveness and budgeting. There are 4 of these The samples I’ve selected are:
  • I am impulsive
  • I am bad at budgeting

So, for the third to last time, let’s check out the scale of proportions


 
Full house again! PDA has no similarities with the non-PDA autistic group for the four impulsiveness and budgeting traits



Here’s the Traits View-anometer again: we have seen 139 of the 155 traits, and only 16 left. We are nearly there.





Time for the final intermission. 

PDA is, to my mind, a wonderfully positive neurotype. 

As we have seen, it does not merely entail demand avoidance and anxiety 

These wonderful, positive words were contributed by members of a peaceful PDA parenting support group on Facebook after they were invited to describe their PDA children using 3 words only 

As you can see, the most common word used is funny

Following this are creative, caring, loving, intelligent, talented, determined and bright





This is all the words fitted to the acronym PDA

PDA Society used this to illustrate their PDA Day theme of
positive PDA last year. I feel there is an important message in this graphic, and the story behind it:


PDA is not a negative label


Yes, it has its dark side, but it has an equally valid light side too 


Perhaps now you can see why so many of us adult PDAers embrace our PDA identity with pride and enthusiasm?





OK, this is the penultimate traits batch: 4 traits relating to chill out style. 

Examples are:
  • I like being at home, spending time alone with the comfort of familiarity. 
  • I find comfort in some routines, but don’t like them imposed on me. 

What will our old friend the scale of proportions say about this batch?


 
It’s a draw! PDA has an equal number of significant differences as similarities with the non-PDA autistic group 





And we have made it to the final traits batch; this is a big: employment traits. There are 8 of these 

The two sample traits I’ve chosen are:
  • My perfectionism in work causes anxiety and makes it hard for me to keep up. I can’t cope with being told what to do by bosses and managers.
  • Don’t forget that all these traits are from a big study I coordinated with fellow PDA adults 3 years ago.

So for the final time this morning: what will the scale of proportions say?





It’s not a full house or a draw: PDA has 4 more significant differences than similarities with the non-PDA autistic group 

Now, although this isn't a full house, I think it is important to note that the PDA group has 6 significant differences from the non-PDA autistic group for employment issues: 

Being employed is important to people (well, it's not to me because I avoid it!)

So this shows up one of the many reasons why we need PDA awareness and accommodations. 


Society needs to cease sweeping us under the carpet!





And that’s it! The Traits View-anometer has told us that we’ve now viewed every one of the 155 traits




To recap, of the total 155 traits, over 2/3s showed a significant difference between PDA and non-PDA autism (with PDA scoring higher in every instance) 

I hope that my presentation today has shone some light for you onto the differences between PDA and non-PDA autism 

Thank you so much for listening!