About this research project

Introduction
The purpose of this study is to explore the experience of living with Autism and Pathological Demand Avoidant behaviour (PDA) a profile within the autism spectrum which is also referred to as Extreme Anxiety-based Demand Avoidance, or Intolerance of Uncertainty.  The study is being conducted by Dr Alison Doyle and Dr Neil Kenny through the School of Inclusive and Special Education in Dublin City University.   Ethical approval for this project has been obtained from the Dublin City University Research Ethics Committee.  Neil and Alison can be contacted via email to prismpdasurvey2018@gmail.com

What is this study about?
We want to find out more about the prevalence of Extreme Anxiety-based Demand Avoidance in the Republic of Ireland, which can result in avoidance of school and other social activities.  We would also like to find out more about how this demand avoidant profile affects the lives of children, young people, and adults, and to determine the extent of these difficulties in relation to education and healthcare. 

The PDA Society provide a comprehensive description of PDA behaviour, and the National Autistic Society describes the distinctive features of a demand avoidant profile as:

• resists and avoids the ordinary demands of life

• uses social strategies as part of avoidance, e.g distracting, giving excuses

• appears sociable, but lacks understanding

• experiences excessive mood swings and impulsivity

• appears comfortable in role play and pretence

• displays obsessive behaviour that is often focused on other people.

Specifically, we would like to hear about the lived experiences of adults with a diagnosis of Autism and extreme anxiety-based demand avoidant behaviour, intolerance of uncertainty, or PDA.  We would also like to hear from families and professionals supporting children, young people, and adults who are living with these experiences.

Why are we doing this study?
We hope this study will contribute to a wider awareness and understanding of Demand Avoidant behaviour, and improve assessment, diagnosis, services, interventions, and supports for children, young people, and adults. We also hope that the study will provide a more accurate picture of the prevalence of PDA in Ireland, as we believe that this is essential information for planning health and education services.

What do you want me to do?
We would like you to consider participating in the study by completing this online survey, which should take no more than 10 – 15 minutes.  On the final page, you will also have the option of including your email address if you would like to participate in an individual interview or focus group interview.

How will this information be used?
The data from this survey will provide quantitative information about the prevalence of Autism and extreme anxiety-based demand avoidant behaviour, intolerance of uncertainty, and PDA.  It should also identify important factors and variables that affect the quality of life for children, young people and adults, and cast a light on access to education and health care provision. 


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