PDA in adults: what the demand avoidance profile means, and support that works

The idea came from the psychologist Elisabeth Newson, who described it in the 1980s for children who did not fit the common picture of autism but who shared demand avoidance as a central difficulty. She called it pathological demand avoidance, which is where the initials come from. Many people object to the word pathological, and some use persistent drive for autonomy instead, which keeps the same initials and puts the need for control at the centre. Others say extreme demand avoidance. You will see all three.

A demand is wider than an instruction. The National Autistic Society groups demands into three kinds: direct ones such as a request, internal ones such as hunger or the feeling that a bill needs paying, and indirect ones, which include a question that expects an answer or a plan that has been made for the person. This matters at home, because a kind question ("would you like a cup of tea?") can land as a demand in the same way an order does.

It also matters that the research is thin. The National Autistic Society says the characteristics are debated, that prevalence is unknown, and that critics see the same traits as sensory differences, anxiety or a poor fit with the surroundings, which can be supported without a separate label. People who identify with the profile, and their families, often say it describes their lives better than anything else has. You do not need to settle that debate to use what helps. Autism in adults is the guide to the wider subject, and disability care at home covers support in general.

1. 1

   Write down examples first

   Before the GP

   Note specific times when an ordinary demand could not be met, including things the person wanted to do, and what happened next. Real examples from home, work and the past carry more weight than a label.
2. 2

   Ask the GP for an autism assessment

   The NHS route

   A GP can refer an adult to the local autism team. In England you can choose which NHS service does the assessment, which is called Right to Choose. Another GP can be asked if a referral is refused.
3. 3

   Tell the team about the demand avoidance

   At referral

   Ask how they assess demand avoidance and whether they would describe a profile in the report. An assessment done in a demanding way may miss things, and the PDA Society asks assessors to work indirectly and flexibly.
4. 4

   Read the report for what it says helps

   Afterwards

   Whatever words are used, a good report describes the person's strengths and needs, including how they manage demands. That description is what a council, a carer or an employer can work from.

The NICE guideline on autism in adults, CG142, does not mention demand avoidance, and neither of the two diagnostic manuals, the DSM and the ICD, lists PDA. So a report may say autism with a PDA profile, autism with a demand avoidant profile, or simply autism with a description of how the person responds to demands. The support that follows can be the same. Autism diagnosis as an adult explains the referral, the waiting time and what the appointments involve, and the NHS page on autism assessments covers Right to Choose.

The PDA Society groups its approaches under the letters PANDA: prioritise and compromise, anxiety management, negotiation and collaboration, disguise and manage demands, and adaptation. Its guide to PDA approaches explains each one. The idea running through them is that the demand is the source of the anxiety, so reducing the pressure of the demand works better than pushing harder or offering a reward. The Society says traditional behaviour-based methods can increase anxiety and reduce trust.

Prioritising comes first. Agree the handful of things that cannot be dropped, which usually means safety and medication, and let the rest bend. If a shower happens in the evening instead of the morning, or lunch is eaten at three, nothing has gone wrong. The National Autistic Society also suggests avoiding eye contact, touch and confrontational positions when someone is struggling, and moving anyone watching out of the room.

Some adults describe their own ways of managing. One quoted by the National Autistic Society says that giving themselves a way out makes demands easier to meet, because they know they can change their mind. Another suggests putting bills on Direct Debit so the demand of paying them never arrives. Small changes of that kind remove a demand altogether.

Flexibility has to include change from day to day. The PDA Society says approaches that work one day may not work the next, and asks supporters to watch for burnout. Autistic burnout describes that slower exhaustion, and meltdowns and shutdowns covers what to do when the pressure has already built too far.

The same person, over a long time, counts for more here than almost anywhere else. Trust is what lets the approaches above work, and trust takes weeks to build and is lost when a stranger turns up. NICE asks staff working with autistic adults to build a trusting relationship and to maintain continuity of individual relationships wherever possible.

PrimeCarers is an introductory service, not an agency or a care provider, and it has no CQC registration. Carers on it are self-employed. The autistic adult, or the family where the person wants them involved, chooses the carer, meets them first, and agrees the hours, the routine and how contact works directly with them. They can keep the same person for as long as it suits both of them. If you are looking for someone flexible who will work in a low-demand way, search for carers near you and compare their rates, then talk it through at interview. Autism support at home covers the sensory side and the routine in more detail.

There is no way to search for carers by PDA or autism experience, and we do not check qualifications, training or references. What a carer says about their experience is their own account on their profile, so ask for examples at interview: show them two or three pairs from the table above and ask how they would say the rest. Questions to ask at interview has more. Before a carer's profile appears we check their identity and right to work, confirm an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and interview them online. Separately, carers are insured while they work. How we vet every carer sets this out.

If you have spent years following advice that did not help, such as firmer boundaries, rewards and consequences, or reminders repeated more loudly, you may feel that you got it wrong. The approaches above ask for a different stance rather than more effort: less pressure, more negotiation, and accepting that a day may go differently from the plan.

Where the person you support is an adult with capacity, they decide how much the family is told and who is involved in their support. That can be hard when you have been involved for years, and it is part of the same respect for autonomy that the approaches rely on. If there is a learning disability as well, making decisions for a grown-up son or daughter explains capacity and best interests, written with learning disability in mind.