PDA: Are we repeating the same mistakes we’ve already made?
This article was co-authored by David Gray-Hammond, Tanya Adkin, and Autball
If a tree falls in the woods and no one is there to hear it, does it still make a noise?
While a lot of PDA literature, including the recent practice guidance, does indeed state that non-speakers and intellectually disabled Autistic people can have a PDA profile, are we ignoring the elephant in the room?
What does PDA look like in non-speakers and intellectually disabled Autistic people?
Nobody seems to know.
“Those with severe IDD were excluded from some of the analyses regarding the rate of PDA in subgroups, given that it is difficult to envisage the whole PDA phenotype developing in an individual with severe or profound general cognitive dysfunction.”Gillberg et al (2015)
It seems as if no one has even asked them about their experiences.
“For this study, only data from parents who reported their child to have mild or no learning difficulties/intellectual disability were included in the analysis.”O’Nions et al (2014)
The above quote was taken from a paper called “Development of the ‘Extreme Demand Avoidance Questionnaire’(EDA‐Q): preliminary observations on a trait measure for Pathological Demand Avoidance.” It literally sought to develop, and did develop, a tool for the identification of extreme demand avoidance/PDA. While guidance does say that the EDA-Q is not a diagnostic tool, they also say the following:
“Nevertheless the EDA-Q is useful in assessments”PDA Society Practice Guidance
Much in the way that historical research around autism has looked at young, white boys, creating bias in the diagnostic criteria (which is responsible for an unfathomable amount of harm); we are creating diagnostic (but not) tools for PDA that exclude intellectually disabled Autistic people. No wonder we aren’t finding them!
There seems to be some very familiar narratives appearing around PDA.
There is a suggestion of a spectrum of which PDA only exists in those with average or above average IQ’s. This is disturbingly reminiscent of Asperger’s and the sub-categories of autism that were consolidated in the DSM 5. The era in which PDA was conceived was the era of the spectrum. It seems that we left PDA behind.
One of the reasons these sub-categories were consolidated is because of the lack of diagnostic consistency, much like we see within the PDA narrative now. We have clinicians refusing to accept it’s existence, additions and adaptations to criteria, the not so subtle suggestion that PDA can only exist within a certain type of cognitive function. Those that think it is not exclusive to Autistic experience, and those that think it is a trauma-response or highly sensitive neuroception. There is no agreement as to what PDA is. As such, it’s no wonder that so many clinicians are refusing to accept it’s existence.
Another one of the reasons for the consolidation was the tendency to dismiss the needs and struggles of those that were labelled “aspergers” or “high functioning”, versus the ignorance of autonomy in those deemed “low functioning” and the attribution of any co-occurrences to “severe autism”. Is the reason we are not identifying intellectually disabled PDA’ers because those driving the narrative are attributing any additional needs to “severe autism”? This would also explain the exclusion of non-speakers. They have not moved on from the spectrum era.
We also need to consider “Aspie supremacy” where by a group of people considered “aspergers” felt that they were superior and separate to “general Autistics”. We are seeing the same thing arise in corners of the PDA community and we believe that the exclusion of intellectual disability from the narrative is contributing to this.
There is literal and blatant exclusion of non-speakers. This is done by leaning heavily on speech and language, and “high verbal ability” in the suggested identification of the PDA profile. Again, have we learned nothing? The long held assumption, that non-speaking meant non-thinking and non-feeling, seems ever prevalent in narratives around who does or does not fit the criteria for PDA.
We are not saying that PDA does not exist. The authors of this are either PDA or have PDA children themselves. What we are concerned about is the proliferation of harmful and exclusionary narratives, and the way they create division from the community. The things that are often most helpful in understanding one’s neurodivergence is a consistent and inclusive idea of what that means. We have often discussed the trauma that Autistic people experience, could the narratives around PDA be contributing to that?
If the professionals who are trying to control the positioning around what is PDA can not even agree without arbitrarily excluding people, maybe they should back away. Where is the voice of PDA individuals in the development of research and guidance? The Autistic community as a whole tends to do far better at defining and explaining Autistic experience than any observational model, we can see this in the leaps we have taken in research. It’s time that PDA individuals were offered the same privilege.
Learn from past mistakes, in an effort to not repeat them. So in answer to the question “if a tree falls in the woods and nobody is there to hear it, does it make a sound?” YES. It does. Does PDA exist within intellectually disabled and non-speaking communities? Just because researchers haven’t decided that it’s worth looking at doesn’t mean the answer is no.
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