The importance of undiagnosed adult PDAer voices

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." 


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