“My child fits PDA but I don’t think they’re autistic”

“My child fits PDA, but I don’t think they’re autistic, I don’t see any signs of autism.

This is a common statement that comes up a lot, especially on PDA groups. Someone has discovered PDA and realised it fits someone they know, or even themselves, but they struggle to see how they/they person they know, can be autistic.

Often included is the question, “can you be PDA and not autistic?”

I want to talk about some of the reasons why you might not be seeing any autistic traits in yourself/someone else and hopefully provide some insight into what’s happening here.

Firstly I want to address the main question – can you be PDA and not autistic?

Research on PDA is still very new and small, there’s a lot we don’t know and much we are yet to look into. Research takes a lot of time and money, so it’s often slow going, unless there’s a pandemic or something pushing the research forward faster.

The research so far shows a strong link between PDA and autism, in fact I don’t know of any research that shows that PDA can exist without autism. Current thinking is that PDA is a type of autism, or a profile on the autism spectrum. There are a lot of theories but not much evidence to show exactly what causes PDA, but so far what we do have points towards autism and PDA being connected. My theory is that whatever hereditery genes cause autism also cause the neurological difference that is PDA. Hence the phrase ‘all PDAers are autistic but not all autistics are PDA’. Nothing is 100% so there could be a chance that some PDAers are not autistic, but as of yet, it looks like if you are PDA, you are automatically autistic.

With that in mind, even if you cannot see any autistic traits, chances are you/the person you know is still autistic. But why can’t you see any, or few, autism traits…

What does autism look like? For a long time autism was based off some pretty narrow and innaccurate stereotypes. People like Kanner, Aspergers, Simon Baron-Cohen and Attwood have spent years telling the world what autism looks like and painting a heavily stereotyped and biased picture. Far too many people still think autistic people cannot speak, lack empathy, are mostly male, have no imagination, cannot understand and use sarcasm, etc. The words “you can’t be autistic because…” are heard so often by use autistic people that it’s exhausting.

You may have heard the phrase ‘if you’ve met one autistic person then you’ve met one autistic person’, which was meant to explain that not all autistic people are identical, we can be very different.

Some autistic people stim by flapping their arms or rocking back and forth, while others stim by watching lights and chewing the inside of their mouth, and others stim by fiddling with objects and tapping their foot, while others may not stim at all.

Some autistic people just watch others rather than joining in with conversations, while others jump in loudly, others may join in with jokes or sarcasm, while others trip over their words, and others may just say the odd quiet word. Some talk in facts and figures while others talk in stories and lies, and others use small talk.

Some autistic people hate bright lights and loud noises and strong smells, others may love all those things. Some may do everything by themselves, while others need help doing most things, and some help with a bit of activities but not other activities.

There’s no one way to be autistic, there’s no one look, no one set of traits. We all might struggle with non-autistic styles of communication, but then so might all non-autistics struggle with autistic styles of communication. Autism is a difference in neurology meaning the way our brains work, the way we understand the world and how we respond to it, is different. But what that looks like can be anything. So sometimes, if you cannot see autism traits in a person, it might help to be sure you’re not basing your understanding of autism on outdated stereotypes.

Masking can also hide our autistic traits so that others may not realise we are autistic. We often mask to hide who we really are because we have experienced others disliking us when we don’t. Masking can help us get through social situations or school/work too, hiding our feelings and struggles inside until we are somewhere safe to let it all out. When we mask, we display an image of ourselves to the world that isn’t representative of who we actually are. So it can help to make sure the person you think isn’t autistic isn’t actually masking, you may be missing the traits that are hidden away.

Are you autistic yourself? If the PDAer in question that you are struggling to see autism traits in is a blood relation of yours, there’s a chance that you too may be autistic, if not PDA as well. I’ve heard people say “my child can’t be autistic because they’re like me and I’m not autistic” only to later realise that they actually were autistic all along. There’s a genetic componant to autism, quite often if a child is autistic, then one or both parents are auitistic as well. This can make it harder to see autism traits if the traits being displayed are seen as non-autistic traits.

Are the autism traits being hidden under other traits? It’s quite common for some diagnoses to mask autism traits, in particular ADHD. Many people report they or someone they know who was put on medication for ADHD to start to notice more common autism traits afterwards. It’s like the ADHD traits were so strong that the autism traits couldn’t be seen for them.

Autism traits can appear different in PDAers. PDA can skew the more typical autism traits making it harder to recognise them. Things like a desire for routine and sameness may not show up in PDAers because our PDA resists routine and sameness, prefering novelty and change. Things like wanting to share interests or overshare or eat same foods or stim or use sensory items can all be demands for PDAers meaning we are less likely to do these things even when we want to.

There is some research showing PDAers may tend to use social strategies to avoid demands resulting in a better developed ability to communicate neurotypically. Our need to avoid demands means we learn how to speak non-autistic in order to escape demands easier. Many PDAers mask instinctively from a young age in order to cope with a world full of demands, often meaning we aren’t seen as autistic as easily.

And when our anxiety and need to avoid demands is so great, this can also mask more typical autism traits too. When PDAers are in fight/flight/freeze mode so often it can be hard to see anything else other than those behaviours.

Someone wise once said that autistic stereotypes are often based on traumatic autistic people, so it’s hard to recognise what a non-traumatised autistic person looks like. If we base our understanding of autism on trauma, and then it won’t cover what traumatised PDA looks like, then it will be hard to see what autistic people look like, especially ones that have experienced little to no trauma.

Most of autism research is based on how others see autistic behaviour, this is largely because the research was done by non-autistics who were guessing at our internal states and experiences. This has meant that many autistic people have struggled to relate to the stereotypes of autism because they fail to match how we really feel and think on the inside. If you’re an undiagnosed autistic/PDAer trying to recognise autism in yourself or someone else but you’re basing it on how non-autistics see autistic people, then chances are you won’t recognise the autistic traits. That doesn’t meant you/they are not autistic, but rather that you’re using an ill-informed guide.

So to sum up – chances are, if you/the person in question fits PDA, they probably are autistic, even if it’s hard to see how. It might help to speak to other autistic people and make sure you’re getting an accurate idea of what autism looks like or how autistic people actually are. But also take into account that autism traits can be masked or hidden underneath other disabilities and behaviours, including trauma, and that autism in PDAers often looks different to non-PDA autism.

Maybe one day we will get an answer as to whether PDA can exist away from autism, although I’ll be surprised if it can. But in the meantime, if you’re sure you/someone you know is PDA, it’s probably best to go off the assumption that they likely are autistic, even if you can’t see it. But what is most important is ensuring their individual needs are met, whether they turn out to be autistic or not, because no two autistic people have the exact same needs and abilities, so an individualised approach is important.