Being Misunderstood – 2018 Survey


Experiences of the PDA Profile of Autism

Education, health and social care services are designed to be 'needs-based' and 'outcomes-focused'.

While the intention is clear, there is a group of autistic people whose needs are frequently not identified in detail, not understood in practice and not fully communicated between professionals. As a result, outcomes are very poor.

This was the conclusion of an extensive survey of almost 1,500 people into experiences concerning the Pathological Demand Avoidance profile of Autism. It was carried out in March 2018 by the PDA Society.

Key findings:

The results show that very many young people with a PDA profile of Autism are finding it very difficult or impossible to cope in the school environment, and the lack of support available from services means that families are often relying on their own research to work out how to support their children.

The results demonstrated the ways in which difficulties persist into adulthood, exacerbated by a continued lack of understanding and support from services.


It is concluded that it is in the interests of everyone that professionals are empowered to see the individual and focus on improving outcomes.

For this to happen there are a number of recommendations, the most important being that local authorities should develop Position Statements to clarify their position on the PDA profile to service providers.

Getting involved: Find out how you can help to change things

Find out more about the PDA profile


Published: 2018