Sunday, June 13, 2021

How PDA avoidance is different from other types of avoidance autistic people may experience.

I've come across much confusion about what PDA avoidance is, with people assuming it's any avoidance experienced by autistic people. The assumption is often accompanied by spitting outrage at PDA's classification as an autism spectrum subtype. Autism, it is cried, should not be divided into subtypes. It's all one, homogenous thing, and subtypes are not just misleading, but destructively divisive. Assumed functioning abilty (e.g., "high functioning autism" and "mildly autistic") is all about how others experience autistic people, and not about our inner experience. Further, our ability to function may vary.

In this light, I can see where confusion about PDA comes from. PDA stands for "pathological demand avoidance", and is both the name of our neurotype (a distinct neurological difference), and a description of one of its traits (confusing already!) On top of this, PDA is classed as an autism spectrum condition. This can lead people to assume:

autism + avoidance + the negative adjective "pathological" = PDA

How dare theorists who aren't autistic brand autistic avoidance "pathological"?!

Collins Dictionary defines pathological as:

1. adjective [usually ADJECTIVE noun]
You describe a person or their behaviour as pathological when they behave in an extreme and unacceptable way, and have very powerful feelings which they cannot control.
He experiences chronic, almost pathological jealousy.
He's a pathological liar.
...a pathological fear of snakes.
2. adjective
Pathological means relating to pathology or illness.
[medicine]
...pathological conditions in animals.
 

OK... so I think this is the root of the spitting anger members of the autistic community have against the concept of PDA as an autism spectrum subtype. And, if this was truly what PDA is (autism + avoidance + the loaded adjective "pathological") then I'd be in 100% agreement that PDA does not merit classification as an autism spectrum subtype, and that suggesting it does is insulting to autistic people. I mean, who wants to have their avoidance labelled pathological?

Now comes a possibly shocking revelation: I, and the majority of the PDAers I've spoken with, embrace the term "pathological" for 100% describing the nature of our PDA-style avoidance.

But you can't want to have your rational avoidance labelled "pathological"! I hear some of you cry.

My answer is, no, we do not want our rational responses labelled pathological, but PDA avoidance is not rational (I'll come back to this).

It's been suggested that PDA avoidance is caused by autistic inertia (difficulty switching tasks), learned anxiety, trauma, sensory overload, and/or executive dysfunction (causing difficulties with remembering to start tasks, and maintaining focus on mundane activities). However, as someone who identifies as being PDA, while all these factors may indeed cause PDAers to avoid things, none describe specific PDA-style avoidance. PDA avoidance is something completely different: a very distinct "monster".

PDA avoidance is not autistic inertia. It is not learned anxiety. It is not caused by stress or trauma, and it is not a response to overload. And while all these things can paralyse us and make us additionally avoidant, they do not account for our innate "pathological demand avoidance". 

 



How PDA avoidance is irrational 

PDA-style avoidance is a force within all PDAers that says "no" to anything and everything, including things we'd enjoy, and things which would benefit us. It is with us 24/7 like a grumpy goblin sitting in our brains irrationally pulling our strings, like we're its puppet, to avoid every single thing we're presented with. PDA-style avoidance blocks us from fetching a drink when we're very thirsty and the drink we need to quench our thirst is easy to reach. It tells us that reaching that drink and consuming it must be avoided because it's a threat we must avoid. PDA avoidance makes us panic if we're invited to go to a place we've been longing to visit. It tells us the invitation is sinister, and sneakily operates our emotions to believe that bullshit. 

PDA-style avoidance is not learned. It's evident in tiny babies who resist every day "demands" such as feeding, or engaging with parents. PDA-style avoidance appears to be very much a genetic thing. It crops up frequently in families with a PDA history, and in family backgrounds in which children are well-nurtured.

History of autism spectrum clasification

So if PDA is not simply autism + demand avoidance, how can it be an autism spectrum condition? The answer is found through examining what the autism spectrum actually is: namely a concept entirely invented by the Diagnostic and Statistical Manual of Mental Disorders in 2013 when they published their 5th edition (more commonly known as the DSM-5), a diagnostic tool published by the American Psychiatric Association. That's it. There's no magical universal truth to the concept of the autism spectrum. Further, for the benefit of autistic people objecting to the concept of PDA because it's a definition invented by non-autistic people: well, so is the entire autism spectrum(!)

Prior to the DSM-5's 2013 publication, there were separate classifications for autistic disorder and Asperger's disorder (which was classed as having "less severe symptoms"). A third category, clumsily named "pervasive developmental disorder not otherwise specified" aka PDD-NOS, encompassed
developmental conditions impacting social interaction, communication and "imaginative activity and a limited number of interests and activities that tend to be repetitive." [reference

Edit for clarification following feedback: prior to the DSM-5, PDD-NOS was termed “Atypical Autism” by the ICD (World Health Organisation International Classification of Diseases). And, according to Phil Christie, who had worked alongside Elizabeth Newson who first identified PDA in the 1980s, "Many children with PDA might have fitted those descriptions. By 2011 clinicians were using the umbrella term 'Autism Spectrum Disorder' instead of Pervasive Developmental Disorder ... This reflects the shift in thinking today that PDA is best understood as part of the autism spectrum or one of the autism spectrum conditions." [reference]

"Autism spectrum disorder" was officially introduced by the DSM-5 in 2013, replacing autism disorder Asperger's disorder and PDD-NOS into this new umbrella category: behold the birth of the autism spectrum! 

Many members of the autistic community were delighted that the distinction between autism and Asperger's had been removed. As discussed at the beginning of this article, categorising autism according to apparent functioning ability was and is seen as unnecessarily divisive. All autism is the same and functioning labels should not be used.

The whammy hitting the PDA neurotype, however, is that some autistic people are now assuming that PDA (which the DSM-5 also classes as an autism spectrum condition) is yet another unnecessary functioning label which should be removed because it's all just autism... 

So here comes the big point: while I personally agree that categorising autism by functioning ability is neither needed nor helpful; the DSM-5's classification of PDA as an autism spectrum condition does not make it the same as the conditions previously classed as "autism disorder" and "Asperger's disorder". PDA is not a functioning label. Its arbitrary classification as an autism spectrum condition by neurotypical pen-pushers has not transformed it into "the same as all autism". I mean, I can see where people are coming from when they angrily shout that autism should not be divided into subtypes, but this is the thing, the invented "autism spectrum" has perhaps been constructed misleadingly broad. While "Asperger's" and "autism disorder", to my mind, 100% should have been reclassified into one, homogenous condition; PDA's inclusion here generates massive confusion.

So let's put this straight: PDA is only classed as "autism" (full, current classification invented by neurotypicals = an autism spectrum condition) because of the DSM-5. This does not mean PDA is the same as other conditions under the autism spectrum umbrella. These may very well be one and the same beast, but PDA remains distinct. And our PDA avoidance is not something everyone under the autism spectrum umbrella can experience. It's unique to PDA. I'm not trying to be elitist here. Believe me, our PDA avoidance isn't a fluffy prize anyone else would covet if they truly understood its nature. Neither am I being self-pitying: my PDA avoidance is what it is (like my eye colour). What I am though being is assertive: PDA-style avoidance is unique to PDA. Please, fellow autistic people who are not PDA, stop trying to claim PDA as yours. It's not.  



6 comments:

  1. Thank you. PDA is a very hard thing to explain.

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  2. I totally agree here. As a mother of a 9 yo autistic girl, when I recently got the diagnosis I tried all of the recommended supports. I struggle with getting her to wash (body and hair), brush teeth, get dressed etc. With the new diagnosis I was told autistic people like routine and structure, so I sat with her and made a schedule, so everything was nice and structured. We used the computer and put her favourite pictures on it (space), printed it out and laminated it. Perfect for an autistic person right..?

    Wrong! Even though she designed her own schedule, she couldn't follow it. I didn't know what was going on. All the things recommended for people with ASD did not work. Since learning about the PDA profile, I have implemented the supports/techniques recommended for PDAers and the results are astounding!

    While I don't have a formal PDA diagnosis for her, I have no doubt that she fits the profile; and if the strategies are working, then what more do I need. I have a happy daughter now, and that is the most important thing to me.

    I just wish it was more widely recognised in Australia, as it would have saved us a lot of wasted time and meltdowns/stress.

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  3. Thank you for your passionate and clear explanation. What I don't understand is why PDA can't stand alone as a diagnosis/condition? Why does it have to sit with autism?

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    1. The DSM-5's austism spectrum disorder classification is the only space in which PDA fits at all. Until more solid research is published to prove that PDA is a genuine neurological difference, diagnostic manuals will not name it. I personally think it would be more accurate and less confusing if the classification was changed from "autism spectrum" to neurodivergent spectrum" and for all neuro-developmental conditions (e.g., ADHD, Tourette's and dyslexia) to be included under its umbrella. This would stop people assuming that everything included under the umbrella is indivisible autism...

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  4. As a self-dx PDA adult, this is very well-explained--especially the grumpy goblin part. Sometimes there is just no getting around that damn guy.

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  5. I hope everyone can read this, parents, professionals amd medical specialists. The hardest issue to overcome is that in N.Ireland PDA is lot seen as a seperate issue,its a profile of autism. However, no-one assesses whether your child has or has not this elusive "profile". My biggest issue has been that services that go into schools and give educators advice don't take PDA into consideration, therefore most techniques don't work. My child has suffered horrendous educational disability discrimination because she doesn't look disabled, doesn't seem anxious and all the time she is in a total state of freeze, now no longer able to return to school due to this discrimination. This has been a really useful and clear explanation of why others including other fellow autistics. PDA avoidance is totally pathological, my daughter has shown me that.

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