Demand avoidance

What are demands?

Demands are expectations – some are placed on us by others, such as our family, friends, school or employer. Others are ones that we place on ourselves and may include things that we want to do, such as going to an event or a party. We also experience internal demands from our bodies, when they are thirsty, hungry or tired.

What is demand avoidance?

Almost all of us will have had times when we’ve found it difficult to do a task, especially if it is something we don’t find particularly interesting or enjoyable, like housework or homework. We may try to put it off by doing other things first, ignoring it until the very last minute or sometimes, avoiding it completely. This is what is meant by ‘demand avoidance.’

Our ability to deal with demands will vary, depending on how stressed we are and what else is going on in our life, but it can be a sign that we are struggling or in need of more support.

For some people, their level of demand avoidance may be so extreme that it impacts on every aspect of daily life and can even prevent them from doing enjoyable things that they want to do. This is often known as pathological demand avoidance (PDA) or extreme demand avoidance. Research has found that extreme demand avoidance is seen to a greater extent in people that have neurodifferences, such as autism, ADHD and learning disabilities.

A word about language

We talk about ‘extreme demand avoidance’ in line with our neuro-affirmative approach, but we also refer to pathological demand avoidance (PDA) as this reflects the language you are likely to hear when you talk to professionals, particularly those working in schools and health practitioners. See our page on Amaze’s use of language for more information on this.

Characteristics of demand avoidance

People with extreme demand avoidance often have a deep need for personal autonomy, which is driven by anxiety. Trying to control everything can help them to feel safe. This is one of the reasons why the term ‘persistent drive for autonomy’ is preferred by some people with PDA. Children and young people with extreme demand avoidance may:

  • Use social strategies such as distraction, negotiation, role-playing, switching focus or withdrawal
  • Experience difficulties with emotional regulation: they may become withdrawn, disengaged, or externalise their distress as pressure builds from multiple demands (often known as ‘demand stacking’) which leads to a sudden outburst.
  • Have intense social interests. Many autistic people have special interests, but for children and young people with PDA, this may be a social special interest such as liking a celebrity or a fictional character and collecting facts, watching videos over and over, and so on. For others, they may become very attached to one person, if they see them as being ‘safe’ and not making too many demands of them.

How is demand avoidance identified?

Currently, there is not a separate diagnostic category for PDA. Most people think of PDA as being associated with autism, but some researchers have found that it is also present in people with ADHD and other ND conditions, so further research is needed in this area.

If you are wondering if your child or young person has PDA you may find it helpful to read the PDA Society’s information for clinicians on PDA identification and diagnosis. If your child is on the diagnostic pathway, you could also talk to professionals and ask if they will be happy to consider PDA when they carry out their observations and assessments.

Supporting demand avoidant children and young people

School, home and society in general are full of complex demands. This loss of autonomy can trigger huge anxiety and emotional dysregulation for a child or young person with PDA.

Traditional strategies that are often suggested for autistic people, such as a strong routine and firm boundaries are likely to increase distress and anxiety for a person with a PDA profile. For them, a different approach that focuses on reducing demands (where possible) and emotional regulation is key. It is also helpful to take a collaborative approach to problem solving so that your child or young person feels they have as much autonomy as possible.

The PDA society suggests what is known as the PANDA approach, which can be summarised as:

  • P – Prioritise and compromise – some demands can be removed altogether; others can be discussed to find a suitable alternative.
  • A – Anxiety management – being calm and co-regulating. You can’t support your child if you are dysregulated yourself.
  • N – Negotiation and collaboration – partnership working where you plan together. Building trust by keeping promises
  • D – Disguise and manage demands – offer information rather than instruction – say ‘your shoes are by the front door’ rather than ‘put your shoes on.’
  • A – Adaptation – small changes to the home environment can ensure your child has a safe space to unmask. Being flexible with plans and noticing when your child has reached capacity, this may mean staying at activity for a shorter time, or rearranging plans if your child is very dysregulated.

Parents also have many demands and expectations placed on us by society. For example, if your child does not eat dinner with the rest of the family, you may feel you should enforce it, but in situations like these, it is better that your child’s needs are met rather than struggling and the whole family feeling distressed every evening, so part of the challenge is also for us to feel comfortable and confident in adapting our lives to meet our child’s needs.

Demand avoidance and emotionally based school avoidance

Formal education is full of demands and schools have rules and expected standards that may be harder for neurodivergent children to meet because of their special educational needs. Strict uniform policies can be hard for those with sensory differences and behaviour guidelines can be difficult for children who struggle to emotionally regulate. Even being asked to sit down and open a book may be extremely challenging for those with demand avoidance. The demands may also cause intense anxiety, which can lead to children being reluctant, or in some cases, unable to attend school.

Our web page on children not in school is a useful starting point and the PDA society also has information and strategies to help children with PDA re-engage with education. If you would like individual advice and support on your child’s education you can also contact our SENDIASS advice line.

Local support services

  • ND Family Support is for parent carers with a child or young person who is at any point along the assessment pathway for a neurodevelopmental difference such as autism and ADHD. You can get advice and guidance right from when a problem is first flagged, through assessment, diagnosis (or otherwise) and beyond. We also run parent support groups across East Sussex and Brighton & Hove, some with a neurodevelopmental focus.
  • For impartial information, advice and support on education, health, social care and disability related benefits, contact our SENDIASS advice line.
  • If your child or young person’s needs mean that they need much more care than other people of the same age, you might wish to consider applying for Disability Living Allowance for under 16s or Personal Independence Payment for over 16s. You can apply even if your child or young person does not have a diagnosis.
  • Education East Sussex’s Inclusion Team is part of the Team Around the School and Setting (TASS), which support schools with improving inclusion, outcomes and attendance. Schools must make the referral.
  • BHISS (Brighton & Hove Inclusion Support Service) works with nurseries, playgroups and childminders registered with Ofsted, as well as schools and colleges to support children and young people with special educational needs and disabilities (SEND), and their families.
  • You can find other services on your Local Offer – the local authority’s online listing of all the services and support for families with children with SEND in the area:
  • East Sussex Local Offer
  • Brighton & Hove Local Offer

Support groups

  • PDA Society– information and strategies for parents and professionals and closed Facebook groups for parent carers of children, teens and adults. See Support & Training – PDA Society
  • Newbold Hope – information and advice around distressed behaviour in children with SEND. Newbold Hope has a closed Facebook group for parents
  • Challenging Behaviour Foundation – information and advice around distressed behaviour in children and young people with learning disabilities. The CBF Family Forum is a private Facebook group for parents and carers of children and adults with severe learning disabilities with distressed behaviour.

More about demand avoidance

Videos

Blue Knot Foundation YouTube videos on emotional regulation:

Online and printed resources

Books about lived experience of demand avoidance

  • The Family Experience of PDA by Eliza Fricker (Jessica Kingsley Publishers)
  • Libby Scott’s fiction series, based on her own experiences as a child with autism, written with Rebecca Westcott, suitable for age 9+ (Scholastic)