In recent years, thanks to social media, more and more people are becoming aware of neurodivergent conditions and developmental disabilities such as ADHD and Autism. But when it comes to their subsets and profiles of Autism, the one that stands out for many was almost unheard of several years ago, until a British documentary brought it to the forefront of public discourse.
Born Naughty showcased the lives of troubled children in the UK, and in one particular episode they covered Pathological Demand Avoidance (PDA) and ADHD.
Now, with social media allowing PDA to gain traction once more (hello, TikTok!), let’s take a closer look at what Pathological Demand Avoidance is and how we can best support those who live with this autistic profile to become the best people they can be.
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Pathological Demand Avoidance Syndrome, coined by UK psychologist Elizabeth Newson, is growing in recognition as a distinct profile of Autism Spectrum Disorder, the most well-known of developmental disorders. Despite this, it isn’t in any of the diagnostic criteria as seen in diagnostic manuals, since research is still in its infancy by comparison to other profiles.
Whilst outwardly it appears that a marked demand avoidance in Autism is driven by anxiety, it is in fact characterised by an overwhelming sense of control in everyday life. Denial results in anxiety characteristics that may be confused with Oppositional Defiant Disorder (ODD) or Conduct Disorder. Many have also had a rigorous Autism assessment only to receive an official diagnosis of Autism known as Atypical Autism. Many people believe this is a cop-out term for “reasons unknown”.
Panic attacks and heightened anxiety levels are classic symptoms that can affect daily life. These behaviours can be approached using conventional anxiety management. But unless the root of the behaviour is recognised this can lead to extreme overwhelm and crisis behaviours akin to trauma reactions.
Some PDA advocates and people prefer to use the term Pervasive Desire/Drive for Autonomy as an alternative to the classical PDA definition. PDAers ‘can’t’ not ‘won’t’ though these two are often confused by those unfamiliar or misunderstanding of the unique challenges those with PDA face.
PDA presents itself, for the most part, similar in adults and children alike. Though these can look very different as time goes on. Some of these traits that occur across the board are:
Everyday life can be a real struggle for someone who undergoes extreme demand avoidance. And often, it’s a sad truth that the avoidance transcends into activities the individual typically enjoys in orer to regain a sense of control.
For example, if you’re a person with PDA, you might not want to go to a party because you don’t know how to act around people. Or maybe you’d rather stay home than go to the mall because you feel like you’ll get overwhelmed by all the noise and crowds.
People with PDA are often seen as socially manipulative due to having seemingly more advanced social skills than other Autistic people. But social difficulties still can be attributed to the Autism profile. In social situations, those with an externalised presentation of PDA often dominate conversations or display behaviour considered socially unacceptable as a way of subverting the given demand of social niceties.
Whilst some people with Autism Spectrum Conditions may mask and use their acquired knowledge of social strategies and social constructs as a defence mechanism, others may deal with the demand by being rude or uncooperative by neurotypical standards. Examples include saying shocking remarks, swearing, or shouting in quiet places.
An example of this avoidant behavior would be contrary to the expected behaviour in a church (sit quietly, not talk, be open to the sermon), a PDAer person may make loud remarks, try to run around, or actions designed to cause upset or act opposite to the expected behaviour.
This is because they cannot comply with the expectation of a set standard of behaviour – this demand causes severe anxiety and this, in turn, prompts a trauma reaction/response to go against the grain of that expectation.
Everyday demands are overwhelming for many people with PDA
Whilst those with PDA can have advanced conversational skills and social skills as mentioned before, these are not infallible. This difficulty often presents itself with friendships and relationships. In particular, this lack of social identity affects relationships with Neurotypical people, but in many cases with other Neurodivergent individuals too.
The adage ‘If you’ve met one person with autism, you’ve met one person with autism’ rings particularly true for PDAers. Whilst certain core traits are shared, presentations can vary wildly between those with externalised and internalised PDA and often cause social misunderstandings that affect both sides deeply.
Some PDAers may be extremely blunt and seemingly unrepentant in their views, even if these are seen as hostile and inflammatory. This is another way some PDA people cannot comply with social expectations despite their skills acquired through the intensive study of others’ behaviour.
Some PDA people will ‘fawn’, another trauma response caused by demand, and they may seem to be very quiet and agreeable to the other conversationalist but in fact, this is often opposite to how they feel inwardly but they do not feel safe enough to express this.
This can cause the PDAer to agree to demands they cannot fulfil and then be blamed, shamed, or punished further for non-compliance because verbally they had agreed.
As mentioned above, autistic adults and children with Autism Spectrum Disorder, especially PDA, are extremely sensitive to stressors. If they encounter anything that makes them feel anxious, they may become irritable, depressed, angry, or even suicidal. It’s important that parents of children with PDA create a safe environment for their children to feel safe, and not a burden.
Even factors that don’t involve other people such as sensory overload can cause a lack of control and fear. These sensory issues turn into mood swings that seem to come out of nowhere. These moods could last anywhere from minutes to hours.
And finally, PDAers often lack a sense of self-worth. They may believe that they are worthless, most often because they’re misunderstood in their intentions. What may seem as agressive emotional outbursts or a personal attack can in fact be the opposite; a manifestation of anxiety and worry about a loved one or important event.
Irritability is a classic sign of Pathological Demand Avoidance
Some PDAers use role play as a coping strategy. They may pretend to be someone else to escape from the stress of everyday demands. In doing this, they may come across as neurotypical, but they are actually hiding behind a mask. This can often lead to a misunderstanding of facial expressions, both from the PDAer and also how they perceive the expressions of others around them.
In children, this mask more commonly takes the form of traditional roleplay such as fantasy characters and make-believe. But in adulthood, this can manifest itself additionally as an alter-ego, altered online presence (to conform to the norms of social media), or can also transcend into the intimacies of adult life with loved ones and partners.
Many PDAers become obsessed with certain topics, such as animals or numbers. This can lead to obsessive behaviour which may include collecting things, counting objects or repeating routines. Whilst common in autistic traits across the board, such PDA traits can manifest themselves as a coping strategy for a fear of the unknown.
Socially obsessive behaviour can also be seen in the way that PDAers interact with others. For example, they may repeat conversations, or spend hours discussing a particular topic. Finally, PDAers struggle with empathy. They may find themselves unable to understand how other people feel, and will often try to avoid situations that could cause distress.
PDA can manifest itself in other mental health disorders such as Obsessive Compulsive Disorder (OCD)
In children, PDA can look very different to adults. Autistic children with PDA typically display some combination of the Autistic traits mentioned above, if not all.
The following symptoms may indicate PDA:
These are just some of the key points to look out for. But it’s worth taking the time to better understand the needs of the child to see how much these stressers can be limited in the child’s environment.
To put it simply, the traditional school system prioritises the neurotypical ability to understand and conform to social constructs. What’s more, it implies a submission and authoritative behaviour that is learnt, one that many autistic individuals struggle with.
And that’s no more so the truth than with PDA. Because in Autistic children with PDA, they may love school and seek joy in the academic learning and studying that comes with it. But if they’re scared of being late for school, that fear may instil itself so severely that the child won’t even get out of bed.
Children with PDA are often overlooked by the school system, which can lead to loneliness
In adults, many of the same behaviours carry over. However, as discussed earlier, there are some behavioural traits unique to adulthood that show signs of a manifestation of demand avoidance.
For example, the person may have difficulty managing their finances, due to the fact that they don’t trust banks and/or financial institutions. Or perhaps they’ve been married for years and have never had any significant relationship outside of their marriage.
What’s more, they may engage in extremely risky behaviours in many aspects of life. In the case of the latter, they may have multiple partners. Yet because they don’t want to risk rejection by potential partners, they’ll only sleep with someone after extensive vetting, to the point where the opportunity is missed. And finally, they may have trouble maintaining friendships and romantic relationships.
PDA can cause volatility in adult relationships, in particular those who are unknowingly demand avoidant. Often, these behaviours are extreme in one of two ways. They may either engage in overly risky sexual behaviour, or abstain altogether.
For example, someone with PDA may be an extrovert by nature and enjoy the company of people. And, they may crave the love and attention that comes with a romantic relationship. But because they don’t want to risk rejection by potential partners, they’ll only take the next step with someone after extensive vetting.
In the case of the PDAer, this can be so extreme that the moment has passed, which in turn can cause resentment and internalized anger towards others.
If you know someone who has the PDA profile, there are a few ways in which you can support PDAers along their journey. Here are a few helpful approaches for children and adults with PDA that you can take:
1) Be aware of your own expectations and biases. It’s easy to assume that everyone else is like us, when in real life, we all have our own set of beliefs, values, and preferences. If you notice yourself judging someone based on their appearance, or assuming that they’re not capable of doing something, then you need to ask yourself why.
2) Don’t make assumptions about what someone else wants or needs. Instead, try to listen to them and find out what they really want. This will help you understand where they’re coming from.
3) Try to empathize with them. When someone tells you how they feel, try to put yourself in their shoes. How would you feel if you were in their situation? Would you do the same thing?
4) Ask questions. You might think that asking questions is a sign of weakness, but it actually shows strength. By asking questions, you’re showing that you care enough to learn more about another person.
5) Find out what makes them happy. Sometimes, people just want to be left alone. So, instead of trying to force them into social situations, give them space.
6) Talk about things that matter to you. For example, if you’re having a hard time understanding why someone doesn’t want to get involved, talk to them about the importance of family and friends.
7) Take note of the things that you like about them. At the end of the day, it’s easy for someone with PDA to feel unwanted, unwelcomed, and an inconvenience to others. So taking time to understand the love languages of the PDAer is vital in how you communicate this to them and make them feel validated.
First of all, if you think you are demand avoidant, you should seek professional help. There are many resources available online, such as the PDA Society in the UK and PDA Matters (not affiliated with this site) in the USA who can assist further.
But if you don’t have an Autism diagnosis, you can always seek referral from a GP who can refer you to a specialist to get a formal diagnosis.
Alternatively, you can take an online Autism assessment test to help you understand yourself and execute some coping strategies in the meantime. The coping strategies advised can help you to reduce levels of anxiety while you wait for an Autism assessment.
It’s easy to come out of accepting your extreme demand avoidant feeling dejected and worthless. But that can’t be further from the truth.
When provided with the tools and knowledge to succeed, PDA allows autistic children and adults alike to channel that anxiety-driven need for autonomy into a self-awareness that drives innovation and change for those who follow in their footsteps.
For more reading, check out the PDA Society, a globally-renowned charity specialising in PDA advice and knowledge.
Last Updated on January 31, 2023 by Neurodadversity
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