Does My Child Have PDA?


If you have been experiencing difficulties with your child's behaviour or you are concerned about their development you may be wondering if your child’s profile fits with the descriptions of Pathological Demand Avoidance (PDA).

PDA is now widely understood to be part of the autism spectrum. Children who present with this particular diagnostic profile are driven to avoid everyday demands and expectations to an extreme extent. This is rooted in an anxiety-based need to be in control. Aspects of the profile may be variable at different times and in different places.

While PDA is relatively uncommon it is important to recognise and understand the distinct profile because it has implications for the way children are best supported and managed. 

​Where do I start?


​As a starting point it would be helpful to read the following articles and resources that are available on our website. These should help you to more accurately determine if you feel that PDA is an accurate description of your child's profile. 
  • Leaflets produced by the PDA Society 'A Parents Guide to Understanding PDA' and 'Recognising ASD's in the Early Years' can be downloaded from our website and provide a brief overview of PDA.
  • About PDA - will give you a full and indepth description of PDA
  • Comparisons with other Profiles of ASD - will offer futher understanding regarding the differences between the PDA profile of ASD and other profiles of ASD
  • Extreme demand avoidance questionnaire - this questionnaire was designed by Liz O'nions to identify individuals with possible PDA for research purposes. It is not a validated tool for diagnostic purposes.  It should therefore be used as a guide to identify possible PDA traits and point to the need for further evaluation which should be based on a multidisciplinary assessment.
  • Understanding PDA (part one) - is a webinar produced by the PDA Society which focuses on The history of the diagnosis, the view of professionals and the latest research, key characteristics and what exactly constitutes a demand.

​What can I do now?


​You may decide that you would like to have your child formally assessed for ASD with a profile of PDA. Our Diagnostic Pathway will help to guide you with this process. However, please be aware that this can be a long and, at times, frustrating pathway for families.

Some families may decide not to secure an assessment for their child. This is a personal decision for each individual family and there are no right or wrong answers.

The important thing is for families to realise that there are plenty of things that you can do to support your child and to improve life at home.  You don't need a diagnosis to begin parenting the 'PDA Way' These options can be implemented either with or without a formal diagnosis or while you are proceeding along the diagnositc pathway.
  • Learn as much as you can about PDA and begin implementing PDA strategies at home. If they are beneficial and you see improvements this will also help to support your concerns that your child may have the PDA profile of ASD should you decide to seek an assessment.
  • Our webinar Understanding PDA (part two) focuses on helpful strategies.
  • Join a few of the many facebook support groups and discussion forums to share experiences with other parents.
  • There are also an increasing amount of local support groups available for parents to attend.
  • Attend a PDA specific training course or workshops to learn more about PDA and appropriate strategies.
  • Begin the process for securing the correct support in school. It is a misconception that you need to have a diagnosis to do this. Support in school should be based on the child’s individual needs and not on any specific diagnosis. Also, the assessments that are carried out from education services and the support that schools put into place can be helpful to support your concerns that your child may have ASD with a profile of PDA.
  • Our list of free services contains signposts to services that can help parents with matters relating to special education needs (SEN).

What is the long-term outlook for today’s children - tomorrows adults?

 

The PDA Society is also often asked by parents what the long-term outlook for their children may be, with questions posed such as: 

  • What does the future will hold for my child?
  • Will my child grow out of PDA? 
  • Will the condition improve as my child grows older? 
  • Will my child be able to hold down a job and live independently?

What we do know is that PDA is a life-long condition, as are all Autism Spectrum Disorders. A child with PDA will grow up to be an adult with PDA. Other questions can be more difficult to answer because the long-term outlook for children with PDA can appear to be very variable and dependant on many factors such as those described below.  

  • How early on in a child’s life were their difficulties identified and did this result in the correct intervention and support? 
  • The severity of the individual's presentation of PDA.
  • The presence of co-existing conditions such as ADHD or mental health conditions, which can make things more complex to manage.
  • An individual’s unique character and personality traits. 
  • Some children become more self-aware and develop coping strategies as they mature, which can reduce some of the challenges. Others may not develop the same level of self-awareness and increased social understanding and may continue to struggle with emotional regulation. 
  • Some children may internalise, rather than externalise, their difficulties. This can take the form of depression, low self-esteem, isolation, social anxiety and self-harm.

With early identification and appropriate intervention, children have a significantly improved chance of developing ‘coping strategies’ which enable them to manage their condition better over time. However, this may not be the case for all people, even if they have received good support, but particularly if they were diagnosed at a much later stage and/or have had little support or very negative experiences throughout childhood and adolescence. Adult life and our series of cases studies provide further information regarding how a child with PDA may develop as they mature into adulthood.


Further information – family resources

You can find further information, leaflets, websites and webinars in our extensive list of family resources and webinars.


Further reading and information about PDA

Further information about PDA can be found in the following areas of our website.

The National Autistic Society also provide an increasing amount of information about PDA.


Please note that the PDA Society are not making any recommendations nor is responsible for the content of sites and links that are external to the PDA Society.

Please contact us if you discover any broken links.