Frequently Asked Questions

​Our enquiry line team receive in excess of 125 enquiries per month from families, carers and individuals with PDA. We have recently revised our website to provide detailed information relating to the most commonly asked questions and areas of concern received by our enquiry line volunteers.  The links collated below, in easy to find categories, should assist families, carers and individuals with PDA to quickly locate this information on our website.


​How do I know if my child may have ASD with a profile of 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). If you are considering requesting an assessment for ASD with a profile of PDA, but would like to find out more information prior to doing so our 'Does my child have PDA?' factsheet will signpost you to the most relevant resources to assist you with this, as well as offering advice regarding things that you can begin doing now to support your child.


​Assessment & diagnosis?

​Possibly the most frequently asked questions received by our enquiry line team revolve around assessment and diagnosis. Our diagnostic pathway for children and diagnostic pathway for adults - factsheets provide a clear step by step account of the diagnostic pathway, useful information to collate and share with medical professionals, options that are available to you if your local area do not recognise the PDA profile of ASD and a list of independent diagnositc centres who are all experienced in indentifying the PDA profile of ASD in accordance with NICE pathways.


Education?

​One of the most common misconceptions we hear, from parents, is that they have been told that their child needs to have a diagnosis before a school can begin the process of implementing support and interventions. Support in school should be based on the individual special education needs (SEN) of the child, as opposed to being diagnosis led, therefore a child does not require any specific medical diagnosis to access support in school

We have revised our education factsheet to cover this area in more detail and to provide information relating to common areas of difficulty faced by parents, such as:
  • Beginning the process of securing support in school
  • The legal duties of schools and local authorities
  • Education, Health and Care Plans (EHCP's)
  • Masking 
  • School refusal.
Our factsheet also includes signposts to useful information to share with your child's school and free specialist support services & charities trained in the law and SEN.   

​Strategies and Support?

​Even following a diagnosis of ASD with a profile of PDA it can be extremely difficult to find professionals who have a good understanding of PDA. Therefore, building a framework of strategies and finding a support network is often dependent upon parents and families being as proactive as possible. This will often involve reading as much as possible about PDA, joining online support groups / forums and attending PDA specific training courses & workshops. Because of the difficulties many families experience in securing an assessment for ASD with a profile of PDA, some will begin to build a framework of strategies and secure support in school prior to their child being formally assessed. The following areas of our website should help you with this process.


​Siblings?

In any family, it can be difficult to balance the needs of individual children within the family unit.  This can be even more difficult for a family when they have a child with PDA. The effects on brothers and sisters can be extremely difficult for them to cope with and may cause them a great deal of stress, anxiety, upset and, in some cases, resentment. Our siblings factsheet provides lots of advice, suggestions and strategies to help families find a balance within the home to try to reduce some of these difficulties and the accompanying stress for siblings and parents. 


What is the long term outlook?

Many parents are concerned about what the long term outlook is for their child. The following areas of our website help to provide further information for families regarding the future, and how early intervention can be beneficial for both the child and the family as a whole. 

  • Does my child have PDA? (scroll down to the end of the factsheet for information relating to long term outlooks)
  • Series of case studies - This series of individual stories is intended to highlight a range of experiences and illustrate what has been particularly helpful or unhelpful for families. The case studies have been split into three sections to cover different age groups (young children, older children and adults).
  • Life with PDA - To provide a positive picture of the possible outcomes for children with PDA as they grow into adults, the PDA Society has compiled a series articles, written by adults with PDA.

​Adults with PDA?

The PDA Society is often contacted by adults with PDA, adults who identify with the PDA profile and by the parents of adult children, whom they suspect may have PDA.  The following areas of our website should help to provide adults with PDA, and their families with signposts and information relating to the most common areas of concern that are expressed by those contacting our enquiry line.

  • Pathway to support - signposts to services, organisations and charities that can provide support in different areas e.g. employment support, transition to higher education and financial support.
  • Diagnostic pathway for adults - a step by step guide regarding navigating the diagnostic pathway
  • Life with PDA and Adult case studies - these pages have been put together by a group of individuals who have PDA, and we hope they will provide everyone, but particularly young adults, with some insights into the experiences of others.

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.