Sunday, June 23, 2019

A Demonstration of Differences Between PDA anf 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!