I am sharing a portion of an email correspondence with PDA researcher Richard Woods.
I am currently working on a longer article piece that discusses some of the controversial points around PDA, and I feel like referencing this discussion will be helpful for understanding.
This is not the entirety of our interactions, but it is the portion that brings up what I believe are the major stumbling blocks between the PDA community and the researchers who critique the PDA label.
| Brook Madera <nopressurepda@gmail.com> | Tue, Apr 16, 10:45 AM | ||
to Richard | |||
One issue at a time, but to highlight:
If you can explain your demand avoidance with rational needs, that is different than PDA which we experience (among other things) as irrational. That would mean we are talking about two different internal experiences. The differences would explain how you have tried to explain how PDA works, where it comes from, so on, then clashes with how the PDA community experiences their demand avoidances and triggers.
If you can’t accept this as a possible premise then we’ll end up talking in circles because any response I provide will be explained by a similar experience you have that may or may not fit what I and others actually experience. This would be why your explanations are received with hostility because it is felt as very disrespectful because your internal experience is validated, ours is not.
This above is I think the root of the ongoing conflict between you and anyone in the PDA community.
| Richard Woods | Mon, Jul 15, 5:12 PM (7 days ago) | ||
| to me | |||
Hi Brook.
Thank you for the clarification, it is much appreciated.
Where does it say PDA’s demand-avoidance must be irrational?
I am not going to explain how I have PDA. The PDA community does not know me as a person, has not seen my medical records, and it discounts my own understanding of how categories, like autism, are attributed by clinicians to people. The Autistic PDA community is simply not in a position to make claims about if I have PDA or not. I should not explain this. There is also the added point that the point Autistic PDA community is unlikely to treat others who identify with PDA as it is presently treating me, i.e., it tends to recognise that having a PDA “diagnosis” is privilege, so it would accept it when someone has PDA. I simply should not need to defend if I have PDA, or not to the Autistic PDA community. I have it in writing and the PDA Society accepts me as having PDA. Likewise, I have just had a highly respected journal accept a piece of mine calling for further research to evaluate PDA’s risks; i.e., my expertise is being respected by neutral parties. If the Autistic PDA community cannot, or will not respect the fact I have PDA, it says a lot more about the Autistic PDA community than it does me! I suppose you will claim Damian Milton does not have PDA, as they also advocate for the “Rational Demand-Avoidance” term?
This matters, as it is reflective of a broader pattern of attacks and behaviour against those it views as a threat. I would be well within my rights to sue those making apparent defamatory attacks against me/ report it to the police. I have been advised by my support network to take those actions against the likes of Sally Cat. I have tried to engage with Sally Cat, and they seem not interested, or unable to substantiate their likely defamatory attacks against me. It is not a good look Sally Cat seems to have no evidence to back up their claims. When I asked them for it.
Will you (and hopefully the rest of the Autistic PDA) stop attacking me and making apparently spurious comments about me?
May your stimming activities be many, and your flow states long.
Richard.
| Brook Madera <nopressurepda@gmail.com> | Mon, Jul 15, 6:11 PM (7 days ago) | ||
| to Richard | |||
It nowhere states explicitly that PDA style avoidance as irrational, but PDA is described as being distinct from rational demand avoidance via PDA Society:
“When demand avoidance is more significant there can be many possible reasons for this – it could be situational; relate to physical or mental health; or relate to a developmental or personality condition. It is sometimes difficult to distinguish underlying causes, but a PDA profile isn’t necessarily always the best explanation for extreme demand avoidance. It’s also important to remember that marked demand avoidance is the most significant, but not the only, trait in a PDA profile. For a detailed exploration of other explanations for marked demand avoidance, please see Identifying & Assessing a PDA Profile – Practice Guidance.”
Myself and SallyCat propose that defining PDA as an irrational style of avoidance is a way to help bring understanding between those that feel like the PDA label is helpful, and those like yourself who feel it is harmful.
We suggest that it be called irrational in that our demand avoidance often compels us to behave in ways that run contrary to our own desires, our own will, and/or our own best interest. While it has some predictable elements, it also can be “predictably unpredictable” in that we can’t always navigate our needs with certainty based on the past. In fact, it isn’t uncommon within the PDA community that we can say there are things we can’t do, and then we are suddenly able to do them simply by virtue of articulating that we cannot. It is for this reason that it is best understood as a personal experience around perceived demands and not only on objective traits or environmental triggers.
PDA (as the PDA community we know experiences it) requires a unique set of supports not outlined in the Low Arousal Approach or on autistic best practice, even when that best practice is informed by actual autistics like yourself. PDA needs often contradict non-PDA autistic needs, such as how we react to language (indirect often being preferred to direct, reading into tone of voice and inflection and the need to “tone police” to a certain degree so as to not trigger a traumatic reaction) and the reaction to structure (being easily triggered by routines that even we establish for ourselves), and that these needs are present from their developmentally appropriate ages and run through families much like any other distinct neurodivergent experience, and not due to additional trauma.
If you experience your demand avoidance due to rational reasons, then you would be experiencing something different than the above. Extreme Demand Avoidance is also debilitating but requires the kind of support you have identified as being helpful for you and others who share your view.
If you take what I have explained (and other PDA advocates agree to these similarities and differences) and redefine it based on your own rational reasons, you are excluding a lot of humans who do not identify with you, nor are they best supported by what you prescribe. Redefining others/ experience to fit your own is (it has been argued) doing what Milton points out with his Double Empathy problem in that two people can experience similar yet fundamentally things, be attempting to communicate based on those similarities, but misunderstand each other because of their innate differences.
When you second guess our own interpretation of our experiences then you are speaking over our voices, which is what generates offense and hostility.
In summary: The “rational demand avoidance” description, definition, and prescription leave myself, SallyCat, and others like us without a voice.
The PDA label as it stands makes room for our existence, and also the existence of rational demand avoidance, making it the more accurate and inclusive option.
Until this is resolved, the tensions will remain. I’m working on an article right now trying to parse apart some of the confusion in understanding PDA and I will be mentioning your research, and I will attempt to be accurate in representing your views.
Hope this helps,
Brook
Richard Woods | Jul 20, 2024, 12:20 PM (2 days ago) | ||
| to me | |||
Hi Brook.
Thank you for the response, it is greatly appreciated.
You hit it on the head, the PDA Society… Which is not an arbiter of clinical practice. It did produce what I consider to be a highly biased research report claiming to provide clinical guidance on the topic. That document is based on the views of 12 clinicians the PDA Society invited to contribute to the report. That document also ignores anything it views to be potentially awkward, like Goodson (2018) which indicates PDA behaviours are caused by executive dysfunction issues to claim PDA’s demand avoidance is not caused by EF issues. There are good grounds to question the reputability of that document and the PDA Society. If you do not believe me, look at how “Profound Autism” advocates are attempting to create a stable definition for that proposed category; trying to completely redefine “profound autism” based on adaptive functioning, instead of co-occurring Intellectual Disability and/ or Language Impairment. Additionally, “profound autism” advocates are conducting a Delphi Method study:
Advocates of “rational demand avoidance”, like myself and Damian Milton do not agree with the arbitrary split between PDA and RDA, that the likes of PDA Society has done. It is using the RDA term in my view! Restating it, would you claim Damian Milton does not have PDA, due to their suggestion of the “Rational Demand Avoidance” term (it originated in Milton’s 2017 book)?
There are problems with basing PDA on irrational demand avoidance, as what is “irrational” is inherently a subjective outlook. There are also times when the person expressing the demand-avoidance will not know/ perceive if the demand-avoidance is rational/ irrational!
One seems to be making a lot of assumptions about how I experience demand-avoidance. Again restarting it, you and the other members of the Autistic PDA community do not know me, or my medical records, or my life story. You are simply not in a position to claim if I have PDA, or not. Likewise, ignoring my ability to understand my own medical records, and how PDA is attributed.
Ironic, that those claiming I am do not have PDA, are talking about them being excluded, when they are the ones excluding me for reasons they have constructed between themselves. I recently peer reviewed a manuscript on those with PDA’s experiences, and I asked the authors to contextualise that research in other studies of PDA lived experience, including the “PDA by PDAers” book. The authors ignored the suggestion! I am not the one doing the excluding…
Says the ones who are not only speaking over me, but making many erroneous claims about me on inaccurate information. Especially, when I rarely publicly discuss my own Autistic, ADHD, anxiety, depression, OCD experiences, let alone how I express PDA features. You and the broader Autistic PDA community do not have the information needed to say if I have PDA, or not!
Claiming I do not have PDA equivalent to trying to diagnose with something else, it is no different attempting to diagnose historical figures. Which tends to be viewed as bad practice to attribute historical figures with autism, ADHD etc, as we lack sufficient information to reasonably make an informed decision on the topic, and not following current “best practice” diagnostic practice/ like not using relevant tools. It is inappropriate to claim someone is not Autistic, or does not have PDA when does not have suitable information to make that claim.
Another way of putting it is. Hypothetically I started publicly saying PDA advocates like, yourself do not have PDA, or not Autistic. The typical response to that scenario would be stating:
· I am not in position to claim said person is not Autistic, or does not have PDA, as I do not have necessary information.
· I did not conduct typical assessment practices.
· Ignoring any formal autism/ PDA diagnoses a person has.
· Generally, it is bad practice to claim any particular person has any neurodiversity/ category without sufficient evidence.
In the above scenario I publicly claimed any specific PDA advocate is not Autistic/ does not have PDA; said person’s response would likely be to formally challenge me, either with a complaint to my university, or police, to sue me. Do you disagree here?
Can you empathise with why I am getting frustrated with you and others making the spurious claim I do not have PDA?
It does not matter what the Autistic PDA community thinks about me having PDA, or not. It simply is not in a position to comment about me having PDA, or not. It is highly inappropriate that it is making claims about me not having PDA.
Restating it, will you (and hopefully the broader Autistic PDA community) stop making defamatory claims about me, like I do not have PDA?
Best wishes.
Richard.
| Brook Madera <nopressurepda@gmail.com> | Jul 20, 2024, 12:47 PM (2 days ago) | ||
| to Richard | |||
Richard,
I am not saying whether or not you have PDA, only that if you can attribute your demand avoidance to rational reasons then we are experiencing different things.
Your experience already has a label and mine does not if you are successful in redefining PDA according to your parameters.
You have decided to speak over me by stating that I must not know why my demand avoidance is happening when it happens instead of hearing me say it is unique from my other avoidances around executive functioning, or sensory struggles, or trauma, and that I approach each of my demand avoidances differently. You are having to fit me into a mold that makes sense to you and your experiences. Doing so will make it impossible for you to discover if there really is something else at work since you refuse to accept its possibility of existing. This also fundamentally limits your research efforts.
I am sorry you have been harmed in the emotionally charged discussions around PDA, but I believe that you are putting yourself in that position by sticking to your preconceptions that are actively harming an entire community.
I say this with confidence because when I give guidance for families that state they are PDA, I do point them toward all the supports they may need such as trauma, sensory sensitivities, EF, so on, and *additionally* address the PDA component. I try to cover all the bases that impact the autistic person.
The advice and guidance I read from yourself and other professionals who think like you leaves out the PDA specific supports and would harm me and my family if I was forced to comply with them, or if I was not informed on them.
I have to draw a line around myself now in that I don’t engage in discussions where my personal experiences are invalidated or I’m put in the position of having to defend what’s working for me or others like me.
Wishing you the best,
Brook
“When you second guess our own interpretation of our experiences then you are speaking over our voices, which is what generates offense and hostility.”
”I am sorry you have been harmed in the emotionally charged discussions around PDA, but I believe that you are putting yourself in that position by sticking to your preconceptions that are actively harming an entire community. ”
💛🏆