Understanding Pathological Demand Avoidance (PDA)
Pathological demand avoidance (PDA) is a neurodevelopmental disorder first described as a pervasive development disorder distinct from autism by Elizabeth Newson in the 1980’s. At the time it was thought that although children who have PDA may show a lot of the same traits as children with autism and other autism spectrum disorders the differences where significant enough that they were not related conditions. PDA is now increasingly being recognised as being part of the autism spectrum even though it generally requires different management and approaches to help the child achieve their full potential and to build lasting and fore filling relationships.
Pathological demand avoidance is a lifelong disability that causes a person to resist the everyday demands of life that are placed on them by other people and events. Mood swings are a common feature and a child’s mood may change from one extreme to another many times a day and without any warning or build up. PDA causes a child to feel high levels of anxiety when they feel that they are not in control of a situation or what is happening to or around them. This anxiety can then lead to challenging and in some cases aggressive and violent behaviour as the child feels that they must do anything necessary to resist the demands and therefore reduce their anxiety levels. When the child is feeling balanced and in control they can seem like any other neurotypical child and generally possess greater social skills than seen in other autism spectrum disorders. This contrast can make their sudden mood swings and outbursts seem even more extreme and difficult to understand.
Although children who have pathological demand avoidance appear to have better social, interaction and communication skills on the surface than other children with similar conditions, they generally lack the true understanding needed to fully develop these skills and form lasting positive friendships with other children. In many cases the child’s social interaction and choices will be based around their need to feel in control. When they are interacting with others they may also feel a strong need to control everything that happens and the result of this can be that the other person/people will feel unhappy or manipulated and leave. Children diagnosed with PDA are often very interested and skilled in role play and social mimicry. They may use these skills to resist demands and may adopt different personas, such as acting like a baby to avoid demands. The skilled social mimicry that can be displayed can make it appear that the child is more capable than they really are, which can lead to meltdowns and mood swings when the situation becomes too much for them to manage or they feel as though demands are being placed on them. Children who have PDA also generally have better eye contact and social and conversational timing skills than other children on the autism spectrum.
The main features of PDA are seen as:
- · An obsessive need to resist the ordinary demands of life
- · Appearing socially capable on the surface but lacking any depth of understanding
- · Extreme and often sudden mood swings
- · Enjoys role play and pretend
PDA can cause a person to seem very controlling and dominating of others. This can increase when they feel they are losing control.
In order to avoid demands and protect their fragile and vulnerable inner selves, children who have PDA will sometimes to go to extremes of behaviour and appear to be very manipulative in their avoidance. Each child’s threshold of tolerance will vary and can change from day to day and even in different situations. As well as this, in any given situation the more their anxiety increases, the less they will be able to tolerate. Strategies used to avoid unwanted demands can vary and may include: refusal, distraction, excuses, delaying, arguing, suggesting alternatives and withdrawing into fantasy or role play. A child may also give reasons why they cannot comply such as ‘my legs don’t work’ or ‘my legs are made of jelly’. When pushed the child may become verbally or physically aggressive. If the demands persist, such as in the case of an adult pushing a child to do something that they do not want too, the child’s anxiety levels will rise quickly and result in what is commonly known as a meltdown. Meltdowns can be understood as a form of panic attack and outside of the child’s conscious control. At this point the child needs reassurance and calming strategies rather than punishment or blame. Anxiety over actual or perceived demands can also build up over time until they finally become too much for the child to contain. This pattern is often seen in the difference between a child’s behaviour at school and at home. This is not due to anything that the teachers or parents are doing better or worse than the other, but because by the time the child gets home after a full day at school they are no longer able to contain the anxiety that has been building up during the day and not been released.
School is a high anxiety environment for a child with pathological demand avoidance. For some children school can be an unbearable experience filled with constant demands and anxiety. These children can be viewed as a problem by schools as their behaviour can be difficult, disruptive and even dangerous in a classroom environment. For some children specialist schools or alternatives such as home education can be much less stressful and enable them to gain a greater level of education. Structured approaches that are often successful for children with autism and Aspergers syndrome can be counterproductive when used with children who have PDA because it can feel too pressured and restrictive. Strategies that may help in school include:
- ·Giving all instructions is a non-confrontational style: .i.e. ‘oh look, it is it time to go and get our coats and go outside’ rather than ‘go and get your coat on’.
- ·Give closed choices so that the child will feel less pressured and that they are keeping some control of the situation.
- ·Keep all body language and tone of voice neutral.
- ·Have a ‘safe space’ that the child can use when they feel anxious.
Some days a child may be able to cope with demands better than others and some situations may be easier than others. When they do well, praise them but not overly as this can make them feel self-conscious and pressured and lead to anxiety. When a child does have a meltdown, it is important to remember that they cannot help their behaviour and have little, if any control over what they say or do. They may swear and scream or lash out and throw things in their highly anxious and panicked state. At this time the best way to help them is to remain calm, with a neutral tone of voice and offer lots of reassurance. Some children benefit from being allowed to withdraw to a safe space such as an empty room, corridor or small enclosed space such as a pop up tent until they feel calmer and more able to communicate.
Pathological demand avoidance is often diagnosed alongside other conditions such as ADHD or dyslexia. Some people start out with another diagnosis such as PDD – NOS, atypical autism or Aspergers before being later diagnosed with PDA. Many children can have genuine problem in controlling their tempers and are likely to need extra help with management and calming strategies as well as de-escalation techniques. Children diagnosed with PDA are likely to need support throughout childhood and into their adult lives though the available limited evidence does suggest that early diagnose and support will greatly increase the level of independence they will be able to achieve as teenagers and adults.
© 2013 Claire