Autism spectrum disorder is not just black and white. There are many shades of grey in between. However there are also other traits associated with autism which may not follow a typical, or standard pattern when it comes to diagnosis. Often, people with autism exhibit common behavioural, sensory and social patterns. Such features include symbolic play, difficulty in understanding social cues, and a sensory profile which can be both hypersensitive and hyposensitive in nature, fluctuating accordingly. Development is often delayed, which leads me into this article. Pathological demand avoidance or PDA for short, is a developmental disorder. More specifically it is a pervasive developmental disorder (PDD) but it is now clinically recognised as being on the autism spectrum (1). It is important to understand that demand avoidance might frequently be common within people who refuse to follow simple orders. But the term pathological is applied to refer to the fact that when a truly pathological degree of demand avoidance is encountered on a long term basis, a diagnosis is more likely to be considered.
Criteria for pathological demand avoidance.
The following criteria is taken from Newson et al (2003). I have removed some language I believe isn’t the best way to describe symptoms and have included personal examples.
- Passive early history in first year: A person with autism might have a delayed or lack of social response, and empathy. It is important to note empathy here. Recent studies are starting to show that empathy is exhibited within people with autism and should not necessarily be treated as a social deficit (2). I have empathy myself which I express on a daily basis. A personal with PDA however, will often have delayed developmental milestones, and becomes actively passive later. A resistance to normal demands starts to form. A late diagnosis of PDA may result if characteristics develop through adulthood, meaning that even if a child did not have any delayed developmental milestones, they would still experience PDA in later life.
- Continues to resist and avoid daily demands of life: A person with autism may shut out any pressure, in a non-social manner, but be reluctant in doing so. This might often be done without consideration of other’s needs. They may prefer direct language. A person with PDA might feel this same pressure, but on a constant level. This is such that they devote themselves to actively avoiding this pressure. As a person with PDA develops language, strategies of avoidance become socially manipulative in the following ways. Firstly, by adaptation to that of the adult involved, secondly by acknowledging a demand but excusing oneself, thirdly by physically incapacitating oneself, fourthly, by withdrawal into symbolic play, and finally by reducing meaningful conversation. Examples are provided below:
- Surface sociability, lack of sense of social identity, pride and shame: A person with autism does not purposefully manipulate and might ask questions or make statements about their interests. In PDA, there is often no identity. A child with PDA won’t identify with children as a category. There is often no sense of responsibility (what may be expected of someone at a certain age), and there is uninhibited behaviour (unprovoked aggression, extreme giggling/inappropriate laughter, kicking/screaming in shop or school). They may not recognise adults as a status despite preferring them to children. Any attempt to punish, reward, or praise is ineffective.
- Lability of mood, impulsive, led by need to control: A person with autism works to their own rules, making it easier for parents to understand what upsets them and what doesn’t. They do not put on any acts for someone else, and as a result rules, routine and predictability help. A person with PDA may switch actions (such as thumping/cuddling) for lack of obvious reasoning. Moods may switch in response to any pressure (going over the top, protesting, fear, or even affection). Any activity must be on the person’s terms and if at any point the person feels that control is not in their hands, they may instantly switch activities. A personal example I have experienced is having a friend tell me that they do not and have never responded to authority. They may apologise, but reoffend, or deny any obvious wrongdoing.
- Comfortable in role play and pretending: Other than arranging objects, a person with autism may have a lack of symbolic play and will often look at things realistically. In PDA, a person might appear to lose touch with reality altogether, often using symbolic play as a coping strategy. They might behave authoritatively (like a teacher) to others, and will want to control events or other people. Indirect instruction often helps.
- Language delay, seems result of passivity: In a person with autism, language might be delayed or deviant, or even non-existent. Facial expression, eye contact, and gestures may not be commonly expressed. A person with PDA has a good degree of catch up, decent eye contact and fair social timing (when not interrupted by avoidance) and as such this may not be considered during an autism diagnosis. Their speech content is different: often discounting demand-avoidant speech. They may ask repetitive questions for distraction, signalling panic.
- Obsessive behaviour: A person with autism may be obsessive, but less so in the case of social topics. They like order and arrangements. In PDA, much of the behaviour discussed is carried out in an obsessive manner. Low level achievement in school/college may be prevalent due to a high motivation to avoid demands. For instance, a person asked to reference his work may fail to do so, and instead write as originally as possible using their own knowledge. However, their grade will be affected by a lack of credibility and critical evaluation of other work. Other obsessions are more social variant. Blame or harrassment towards others they don’t like, or overpowering in fondness for others, targeting of certain individuals.
- Neurological involvement: A person with autism shows less comparable involvement in actions such as crawling, and any situation which may go out of control. In a person with PDA, clumsiness is exhibited, along with physical awkwardness (late crawling). Absences, fits, increased excitability, or any episodic dyscontrol is commonplace.
- Adapting to the adult involved: “Look, I’ve got you something!”
- Demand acknowledgement with excuse: “Sorry, I need to do this first.”
- Physical incapacitation: “I’m too hot/cold.”
- Withdrawal into symbolic play: “My teddy doesn’t like this game.”
- Reduction of meaningful conversation: *bombarding someone with speech*
Pathological demand avoidance is often misdiagnosed or mistaken for other clinical conditions. But research has shown that it is starting to be understood, with appropriate management strategies (1). It has been shown how PDA and autism are similar, but also how different features vary, making it complicated in terms of clinical diagnosis. Where autism management strategies such as routine, order and repetition are helpful, they are ineffective to someone with PDA (3). Thus, important distinctions have to be made within diagnostic criteria in order to provide better support. This article has outlined the underlying characteristics of PDA and provided a comparison to characteristics found in autism.
The reason rewards have been described to be a failure towards someone with PDA is because it relies on compliance (1). Newson’s study showed how his participants behaved in a way that may be seen as humiliating to peers. It also showed how compliance is just another form of control, making it far more unlikely for participants to respond effectively to reward or punishment. To the person with PDA, being asked to do something, with promise of a reward or praise at the end is challenging, because it is still a social situation that is out of their direct control since the person asking the demand gets to decide whether or not compliance or refusal is met with reward or punishment, respectively. Thus, indirect instruction and suggestion may prove to be more effective than direct or authoritative order. In contrast, people with conduct problems are strongly motivated by rewards (4).
There are at least 3 documented aspects that differentiate PDA from autism. Firstly, children with PDA have been described as responding more effectively to unpredictability, humour and spontaneity, which is in contrast to structure and repetition that is associated with autism (5). Secondly, unlike autism, there is a fairly balanced gender distribution in people with PDA (6). And thirdly, fascination and preoccupation of role play, and fantasy, and even difficulty to distinguish between reality and pretence is more characteristic of PDA, whereas people with autism might exhibit delayed or pretend play (7). The differentiating characteristics of PDA from autism make clinical diagnosis more difficult, and also more important.
In summary, while it is important that PDA is recognised as being on the autism spectrum, it is also important to employ different management strategies. Currently, educational or therapeutic practices for people with autism do not seem to suit those described as having PDA. Thus, education in this area to enhance clinical, and general recognition is key. Understanding neurocognitive bases of the pathological demand avoidance profile, and employing relevant, and appropriate strategies, as well as improved assistance and support will be the subject of future research and practice.
(1) Newson, E. L. M. K., Le Marechal, K., & David, C. (2003). Pathological demand avoidance syndrome: a necessary distinction within the pervasive developmental disorders. Archives of Disease in Childhood, 88(7), 595-600.
(2) Nicolaidis, C., Milton, D., Sasson, N. J., Sheppard, E., & Yergeau, M. (2018). An Expert Discussion on Autism and Empathy. Autism in Adulthood, 1(1), 4-11.
(3) O’Nions, E., Viding, E., Greven, C. U., Ronald, A., & Happé, F. (2014). Pathological demand avoidance: exploring the behavioural profile. Autism, 18(5), 538-544.
(4) O’Brien, BS, Frick, PJ (1996) Reward dominance: associations with anxiety, conduct problems, and psychopathy in children. Journal of Abnormal Child Psychology 24: 223–240
(5) Kunce, L, Mesibov, GB (1998) Educational approaches to high-functioning autism and Asperger syndrome. In: Schoepler, E, Mesibov, GB, Kunce, L (eds) Asperger Syndrome or High-Functioning Autism? New York: Plenum Press, pp. 227–261.
(6) Fombonne, E (2003) The prevalence of autism. JAMA 289: 87–89.
(7) Frith, U, Morton, J, Leslie, AM (1991) The cognitive basis of a biological disorder: autism. Trends in Neurosciences 14: 433–438.
This is a personal research article I have produced in order to help people with autism, and people without autism to understand the characteristics of pathological demand avoidance, for educational purposes. Some of my own personal examples come from experiencing potential PDA within other individuals, even if there is no clinical diagnosis. As always, every person with autism is different, thus every person with PDA will also be different, but all share different characteristics which differ in terms of a sensory and social profile.