I spend a lot of my time in Facebook groups, Autism groups (both ones for autistics and ones for parents of autistics) and PDA groups (ones for PDAers and ones for parents). As I talk to more and more people, as I learn more about autistics and PDAers, the more I come to see that the differences we previously thought existed don’t exist as much as we thought, while other differences between autistics and PDAers are more obvious. Some people see PDA as something completely seperate from autism, I’m seeing that we have far more in common than we ever thought. It further confirms my theory that PDA is just something extra that some autistics have, and that this extra bit changes our needs and behaviours in a subtle but obvious way.
In order to understand just how similar us PDAers and autistics are to each other, we have to unpack the (often deeply entrenched) stereotypes and misunderstandings we have about both groups, particularly autism. So called professionals have labelled and described autism and PDA in very negative, basic, and neurotypically viewed ways. Let’s face it, people with little to no experience of a group of people are never going to fully understand those people, especially when they are committed to both ignoring the people they’re studying and are committed to viewing their behaviours through the lens of their own upbringings. Even more so when they insist on seeing any difference in the group of people as wrong, deficient, lacking or broken. The stubbornness of Kanner, the Natzi’s involvement in Aspergers work and the patriarchy dismissing the important work of females meant societies understanding of autism from the start was hidden, misinterpreted, skewered, negatively displayed, biased and narrowed down. It’s taken far too long for real understanding of autistics to permeate societies lens, and even now it’s still far, far from perfect. With large groups of anti-vaxers touting autism as vaccine damage, society entrenching the misunderstanding that there are different types/levels/functioning of autism, negative incorrect stereotypes such as lack of empathy or theory of mind (thanks Simon Boran-Cohen *eye roll*), it’s surprising that anyone has a proper understanding of what autism is and isn’t. Autism advocates have had to fight for years to gain acceptance and understanding, to stop abuse and murder of autistics, to rid society of negative assumptions and simply try to get people to understand that autism is a neurological difference, a way of being, a culture. Even now we are still only a tiny bit near to where we need to be with this, and I suspect we will have to continue to advocate for many years to come.
So unpicking what is and isn’t autism or PDA is quite difficult, we are starting off with negative stereotypes, misunderstandings, and trying to work out how PDAers are different from non-PDA autistics using these incorrect stereotypes. No wonder we’ve come to some incorrect (or not quite correct, because all people are individual) assumptions. I’m learning more and more everyday how little I understand about autism and how much I have already learnt that differs from what we share publicly. Even this blog is littered with incorrect assumptions, something I hope to address one demand free day. But to start i want to list all the ways I’ve come to learn that autistics and PDAers are both similar and dissimilar from one another, busting some myths along the way. And I suspect some of these may be met with disagreement.
- Coming up with different/unusual names for things – this has been seen as a trait unique to PDAers, I’ve found it’s actually far from unique, even for any neurotype. I’ve seen over and over in autism groups that this is something many autistics do, I’ve seen it’s something that even neurotypicals do. Which makes sense when you think about language overall. How its always evolving and changing, how slang develops in cultures the world over. Humans from various countries developed language to communicate, language has spent thousands of years evolving and will continue to evolve as we continue to exist as a species. I doubt PDAers alone are responsible for this. Coming up with new and unusual names for things is not a trait only PDAers have, although we do have a unique reason for why we struggle to use set names for things, we are not the only ones who struggle, it’s just that cause that is different.
- Moving furniture around, needing the environment to change frequently – I’m definitely guilty of thinking this was a trait distinct to PDAers, afterall, the stereotype that autistics cannot tolerate any change in environment is quite an entrenched one. And while many autistics do struggle with changes to environment, many do not. I’ve seen a few threads in autism groups discussing this, one thing that stands out is that the majority struggle with changes imposed on them, which, when you think about it, most neurotypes struggle with this, but the reasons and reactions to imposed changes can differ between neurotypes. It seems changes we decide to make ourselves are a common occurrence throughout all neurotypes. While PDAers have a need for novelty and change that may exceed other neurotype’s needs, we are not alone in craving change overall. Again, the underlying cause may be different but our needs are quite similar.
- PDAers appear better at socialising – while I’m sure from a neurotypical view point, this one might be seen as right, not only does it stink of ableism, not only is it a damaging and highly misunderstood statement, it’s also not correct. The word ‘appear’ is important to keep in mind here, PDAers are not ‘better at socialising’, not by any means, because we cannot group every individual ability to feign social norms into two categories like this. Some autistics are excellent at appearing NT, some are terrible, some PDAers are excellent at appearing NT, some are terrible. The fact that appearing NT is even seen as a positive, something to aspire to, is a very real problem. We are not NT, why should we be expected to pretend to be? The reason so many autistics and PDAers mask/learn to fake NT social norms, is to fit in, because when you fit in you are less likely to be bullied, abused, ostracised, ect. If you fit in you have less demands placed on you. One of the reasons PDAers (and most autistics) pretend to be NT is so they don’t stand out, they want to be accepted, they don’t want to be seen as different. For PDAers, different can mean needing accommodations, accommodations (however helpful) can be a demand. PDAers often display social abilities that far exceed their true ability, many believe this means we are better socially, when in actuality we have little control over this, our fear response means we are able to use social abilities to avoid demands, but these are instinctual, we tend to do very badly when we actively try to use these abilities. ‘Appearing’ to be better socially doesn’t mean we are better socially, and describing our instinctive reaction to imposed demands as somehow better than autistic’s is rather insulting, for both neurotypes.
- PDAers are more intelligent/all really intelligent – this one makes me very angry. While there may (and I stress MAY) be some evidence to show that PDAers have acquired more knowledge, this is likely due to a hypervigilence because of our constant fight/flight/freeze state. When a person is constantly feeling in a place of danger their senses are heightened, they are more aware, constantly searching, interpreting, thinking. This possibly means that we soak up more information in order to use to protect ourselves. This does not mean we are overall more intelligent. Not only is such a statement insulting to others, it also causes professionals to believe someone with a learning disability or low IQ cannot be PDA, which is ridiculous as being PDA does not and cannot protect you from having a learning disability. The implication that non-PDA autistics are somehow less intelligent is incredibly ableist and insulting. PDA doesn’t make a person superior to others, sadly I’ve seen too many who are heading into that territory of belief. The last thing we need is a group PDA supremacists to rival that of aspie supremacists.
- PDAers are all highly verbal – I’m not sure where this one came from but it is nonsense. Parents often become concerned by the way demand avoidance displays in verbal kids (making excuses like “I can’t because my hands are on fire” or “I’m a cat and cat’s don’t wear clothes”), and so seek help due to that, while much of a non-verbal/limited verbal child’s behavioural difficulties are often blamed on their inability to verbally communicate. Quite often demand avoidance in non-verbal children or those with limited verbal ability is dismissed or unnoticed, even if the child is more than able to communicate in other ways. This has led to some believing that PDAers are all highly verbal, despite many having selective mutism or other communication difficulties. Being PDA doesn’t mean you cannot struggle to communicate verbally, nor does it mean we are better than other neurotypes at communicating verbally either. False perceptions like this only create more inaccurate stereotypes and prevent those who fail to meet those stereotypes get the help and support they need.
- PDAers cannot cope with routine/structure whereas autistics need routine/structure – this one is a double sided stereotype. We are all individuals, and while there are commonalities in groups of similar people, there are still some who don’t always fully fit. Most PDAers cannot cope with routine or structure, however there are some who need routine and/or structure. Most autistics like routine/structure because it makes them feel safe and they know what to do, how to act, but not all can cope with them. Routine and structure let you know what’s happening and when, it let’s you plan things. This is helpful for reducing anxiety and intolerance of uncertainty. Some use routines because they are safe and predictable, you can do them automatically without thinking about them. Routine/structure can help when masking as it’s like following a script, it’s safe. Both PDAers and autistics benefit from routine and structure, both can equally feel constrained or overwhelmed by them. What works for one individual may not work for another. There are autistics who struggle with following routines because they have difficulties which mean they cannot always perform activities the same everyday, some PDAers use routines because they can switch off and act automatically without thinking thus bypass demand avoidance.
- PDAers are good at lying while autistics cannot lie – nope! Many autistics do struggle with lying, they can’t understand lies or don’t want to accept lying as something acceptable in society, many feel too much guilt at lying that they refuse to lie, others struggle with the difference between a white lie and a black lie, others just prefer being honest over lying. Many autistics however can and do lie, some see no problem with lying, some use lying the same as neurotypical do, others use lies to hurt people, some use lies to protect themselves. The same can be said for PDAers. Quite often PDAers lie to avoid demands, while autistics do this too the types of demands they are trying to avoid are often different. Many PDAers are terrible liars or refuse to lie or can only lie as an instinctive reaction to an imposed demand. It varies, a lot. The stereotype that all autistics cannot lie is definitely not accurate, it’s sad how many NTs actually believe it though.
- PDAers have better imaginations, autistics lack imagination – again! PDAers are not better than other neurotypes. The myth that autistics lack imagination, even if that’s meant only social imagination, is ridiculous. Just because autistics struggle to imagine NT social situations doesn’t mean they are somehow lacking, afterall I bet NTs struggle to imagine autistic social situations (they’ll probably struggle more since we have lots of help from media on NT social stuff), yet no one is saying NTs lack social imaginations. PDAers often display a lot of role play and imaginative play, quite often to cope with demands, it would make sense if this was more obvious or extreme simply because we have more demands to avoid, therefore sometimes need to use imagination to help us cope. But that doesn’t mean we have a better imagination, it just means we often have more need for it. There are many PDAers who struggle to use their imagination, for example, some have aphantasia so struggle to make/see pictures in their heads.
- All autistics have demand avoidance, PDA is just an autism trait – this one I’ve heard a lot, I can see why people think it as autistics can and do have demand avoidance that is to a level similar to that of PDAers. As I’ve covered above, the similarities between PDAers and autistics are overwhelming, which makes sense since PDA is a type of autism (or autism with an add-on). However, the main difference between PDA and autism is the pathological demand avoidance which we PDAers have, its pathological for a reason, it’s a difference in our brains which cause us to perceive any and everything as a danger to be avoided. For non-PDA autistics, their demand avoidance has very valid sources such as sensory issues or executive functioning, these can become so difficult to manage that it triggers demand avoidance to a similar level of that in PDAers. For PDAers, we have all the same possible difficulties that non-PDA autistics can have as well as the genetic underlying demand avoidance that makes PDA PDA. It’s important that people understand the differences between PDA and autistic demand avoidance (ADA), however neither are more important or less important than the other.
I’m sure there are other stereotypes I’ve not covered of a similar vein, there are a lot of misconceptions out there about autism and PDA and more are made all the time. I hope what I’ve written helps people understand that autistics and PDAers aren’t as different as we originally thought, in fact I’m sure the differences there are are all down to the difference in PDA brains that makes us perceive everything as a potential demand. Having a brain which is constantly feeling threatened and in danger is likely to change some of our behaviours, we are constantly trying to keep our selves safe and alive, using whatever skills we have. PDAers tend to resort to physical or verbal violence, manipulation, controlling behaviour, lying and a shutdown of empathy when we are constantly threatened and feel under attack everyday, when every other technique to protect ourselves has failed to work. But this is not our default, it is a symptom of being mishandled. Of course this can happen too to any human, the difference is that this happens to PDAers even in the most loving of homes, from birth, due to our unique genetic makeup.
If you disagree with anything I’ve written, feel I’ve missed something out, badly worded anything or want more information then please feel free to contact me. We learn best when we communicate with others and are open to considering all views.