Hi, my name is Stephanie and today I want to talk to you about what some people consider a
subset of autism, pathological demand avoidance or PDA, otherwise sometimes
called extreme demand avoidance. This term first came about by a psychologist in the UK
named Elizabeth Newson. It has gained a lot of traction and it does get diagnosed. However,
it actually is not in the DSM-5 or the ICD-10 and has had very little research done about it.
The term pathological demand avoidance was created to describe the following: children
on the spectrum of pervasive developmental disorders who obsessively resist everyday
demands and use socially manipulative behavior to avoid complying. Other features include a lack of
sense of identity, pride, or shame, extreme mood variability, a tendency to appear comfortable
in role play and pretend, and obsessive behavior. Note that this is not in the context
of behaviorism therapies like ABA. This isn't a behaviorist complaining that autistic people just
aren't complying to their every demand. This is an extreme form of demand avoidance that
causes people to not be in school because they can't handle it, and they just,
they're not going to go. It's just not happening. They won't brush their hair or their teeth.
Even like the simplest things are avoided because they're demands. For a better grasp
of PDA, let's look at some of the traits that have been listed: continues to resist
ordinary demands with strategies of avoidance that are essentially socially manipulative
(this was later suggested to be changed to socially strategic), surface sociability but lack
of sense of identity, pride, or shame, liability of mood, impulsive, led by need to control,
comfortable in role-playing and pretending, obsessive behavior (often social in nature),
neurological involvement, passive early history, language delay, non-compliance and insistence
that others comply with their wishes, avoidance of everyday demands, compliance on their terms,
strategic and disruptive behavior in response to requests or limits, aggressive behavior, threats,
or extreme behavior, sudden, dramatic changes in mood, [on screen: forgot to read this one: Lack of
constraint by social norms or sense of hierarchy, behaving as though they had adult status],
lack of sensitivity to others' distress, engagement in fantasy activities,
confusing reality and fantasy, acting out personas and styles. Note that there is no
official criteria. This means there's not going to be a set number of these observed traits that one
has to have to be considered to have pathological demand avoidance. However, people have used a
rough estimate to decide whether someone actually has PDA rather than just having traits of PDA.
There hasn't been a consensus, and this with the lack of research has kind of been an issue
regarding getting it into something like the DSM or the ICD. As with anything, it is not required
that someone have every single one of these traits listed to have PDA. In fact, with the issue of
not being empathetic to other people's distress, some parents noted that their child with PDA were
actually very kind and wanted to help people who are distressed. One population study revealed that
of those studied, slightly under 0.2 percent of people had the combination of autism and PDA. Now,
there is hesitation around calling PDA a subset of autism. Some people feel that it is indeed a
subset of autism. Some people feel that it might be a comorbid condition that is commonly seen
with autism compared to other populations because we just haven't seen it
in other populations in this particularly defined way. Some of the issue comes from the fact that,
unlike autism, there actually appears to be a very even gender ratio when it comes to PDA, as
well as people with PDA not responding well to routine. In fact, they respond better with humor
and spontaneity, which means that these things kind of contradict the general way of doing things
for autistic people. So, some of the methods that someone might use to support someone with autism
wouldn't necessarily do well for someone with PDA. This is why some people hesitate to say that it's
actually a subset of autism. Additionally, they also tend to have a preoccupation with fantasy
and role play, which for some reason people don't think autistic people are good, at which
I don't know where that comes from, personally, but. The UK's National Autistic Society, as of the
research for my video, seemed pretty comfortable calling it a profile of autism on their website.
The PDA society also calls it a profile on the autism spectrum. Now, as I mentioned, things that
are helpful to autistic people might actually be counterproductive or harmful for those with
pathological demand avoidance. So, to help kind of get a better understanding of PDA and also to see
kind of maybe what things would actually be more helpful, I would like to share some information
from the PDA Society's website. Understanding behaviors. Anxiety. The most important starting
point is to understand and accept that a PDA child's behaviors are underpinned by anxiety and a
need to feel in control. Anxiety can be expressed in many different ways, including avoidance,
anger, shouting, crying, restlessness, boredom, fidgeting, rocking, ticks, repetitive actions,
obsessing, skin picking, swearing, hiding, running off, withdrawing, throwing things,
and lashing out at others. The anxiety curve model is a really helpful way to understand anxiety
and echoes the hierarchy of demand avoidance approaches seen in a PDA profile of autism.
In addition, any or all of the following may be underlying: difficulties in processing language,
difficulties with social interaction, confusion about emotions, intolerance of uncertainty,
and sensory overload. Adjusting your mindset. Look beyond surface behavior. Outward behaviors are
just the tip of the iceberg with many contributory factors lying below the surface as explained
above. Rebalance your relationship. A more equal relationship between child and adult based on
collaboration and respect builds trust. Try to aim for win-win solutions. Keep calm and carry on,
focus on the long-term, be flexible, see the positives, and make sure to have support and
self-care for you. Optimizing the environment. Just like giant pandas, our children can thrive in
the right environment. In place of firm boundaries and the use of rewards, consequences, and praise,
an approach based on negotiation, collaboration, and flexibility
tends to work better in PDA households. Top tips include balancing tolerance and demands,
agreeing non-negotiable boundaries, allowing plenty of time, and having an exit strategy. So,
with PDA, we're seeing that there is a large root in anxiety, and because PDA individuals tend to be
more capable of looking like they're comfortable in social situations and interactions that many
autistic people aren't traditionally, they might seem like they're just fine when they're actually
really anxious about things, even down to the very little. So, a lot of the things that help
those with PDA, instead of those set boundaries and set routine, the specific
autistic people with PDA would actually more benefit from flexibility, from being able to
negotiate as an equal partner. Something that has confused me a lot before is that there are
autistic people who are very much rule followers, and that's me. I'm a very much of a rule follower.
I try to meet expectations to what I can. I don't understand when people can just, like, tell people
off and don't respect the rules. That blows my mind. But there are autistic people who do not
understand the concept of there being a hierarchy, of there being authority other than themselves,
and that really confused me. But this is actually very much a part of PDA. Not to say that everybody
who has that particular trait does have PDA. However, it would explain that it's a different
kind of twist on things, if that makes sense. So, for them, since they see themselves as equal as
all the other authorities around them, so a child sees themselves equal to the parent,
which to me is inaccurate. Like, I don't see that as working out, right? But for those with PDA,
they do. They don't understand how this person is above them in any way. And so instead of that
being like, okay, I respect what you have to say to me. I respect that, like, if you give me rules
and things to do, these are the things I have to do because you're my parent and I obey you.
Instead, those with PDA are more like, you and I are on equal footing. I don't get why you can
tell me what to do. I have to be involved in this process or it's not happening. However,
even though this can be seen as very rude, maybe rebellious, disrespectful, etc., a lot
of this is coming from anxiety and it is hard for parents and those around someone with PDA to be
empathetic towards someone who seems to be doing all these crazy things to, just, they can't even
be reasonable and, you know, do the simple things that they're asked. It's very hard for the people
around them who don't understand that this is an invisible disability and this is a subset
or at the very least a profile, something going on in a very small number of autistic people,
and they can't help it. And that's, like, really hard for people like me who are used to, like, you
follow the rules, you obey, and you respect. Like, these are things that I personally follow, so it's
hard for me to understand that. But it's helpful to know that this is an invisible disability just
as much as autism is. It is a profile of autism as far as we understand it, and it's coming from that
root of anxiety and fear and it's important for parents, family, whatever around this person to
reassure them that they are loved. A lot of times praise and rewards are actually counterproductive.
They feel like that's a new demand, like, if you praise me, then you expect that, you know,
I will do this or better the next time and then it becomes too much and overwhelming.
So, really, just being like, I love you and I'm gonna focus on the good things about you,
and maybe we can do it this way, and some days are gonna be no-go days and some days that person's
gonna be having more tolerance for demand. Now, demand avoidance in general is definitely a thing
that autistic people experience, but we're talking about an extreme form, a pathological, if you,
will form of demand avoidance here. Now, I do agree with researchers and professionals that
there really needs to be more research done on this. What is happening here? Why is this
happening? Is this a subset or whatever else of autism? Is this actually some comorbid thing that
applies to other people as well? Is this different from autism because it has traits that are
different than what is typical of autistic people? Etc. It would really help, I think,
also people to get a diagnosis when it's actually recognized in the DSM or the ICD. Obviously,
with these particular individuals, ABA would be even more of a nightmare, because demands are
the absolute enemy and trying to put, ABA, in my opinion, is so much and demanding. To, to imagine
someone with PDA trying to be coerced into that would be a terrible mess. And then there's also
the disadvantages that these people often will be put in, basically, because they're not getting an
education because they're not in school or they're just barely hanging on in school.
People don't understand. They think it's just, you know, this person is acting out and being
basically like a spoiled brat, and it's really hard for people around them to understand them
and they might not quite understand why they're getting the responses they're getting or why
everything is so overwhelming even though everyone else seems to think that these demands are normal.
Anyway, thank you so much for watching today. If you found this video interesting or informative,
go ahead and hit that like button. Let me know your thoughts in the comments below.
Do you or someone you know have pathological demand avoidance? Do you just have some demand
avoidance in general? Have you heard of this before? What are your thoughts? I want to hear
them. If you're interested in videos related to autism from me, you can go ahead and hit that
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for watching. I hope you're having a wonderful week, and I will see you in my next video. Bye!