Pathological Demand Avoidance (PDA)

What is PDA?

According to the PDA society, a PDA profile of Autism Spectrum Disorder (ASD) means that individuals share the following autistic characteristics, currently defined as:

• “Persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviour, activities or interests”
• Often including a different sensory experience in relation to sight, smell, taste, touch, hearing, and internal senses such as hunger or thirst

and in addition have many of the ‘key features’ of a PDA profile

• Resisting and avoiding the ordinary demands of life
• Using ‘social’ strategies as part of the avoidance
• Appearing sociable, but lacking some understanding –
  individuals may appear more sociably ‘able’ than one might
  expect (with, for instance, more ‘conventional’ use of eye
  contact or conversational skills) but this may mask
  underlying differences/difficulties in social interaction and
  communication
• Experiencing intense emotions and mood swings
• Appearing comfortable in role play, pretence and fantasy –
  sometimes to an extreme extent
• Focusing intently, often on other people – with PDA,
  “repetitive or restrictive interests” are often social in nature,
  relating to real or fictional people
• A need for control which is often driven by anxiety or an
  automatic ‘threat response’ in the face of demands
• A tendency not to respond to conventional approaches in
  support, parenting or teaching

For more information see: PDA Society – What is PDA?

However, PDA is not recognised in the clinical diagnostic manuals and research has not yet been conducted to enable clinicians to determine the amount of features necessary for a person to have to confirm that it is part of the clinical explanation for their needs.

• Current thinking about reporting; it is a profile of Autism.   It is not reported as a  diagnosis.

The Association for Child and Adolescent Mental Health has created a podcast for families with information about demand avoidance. A link to this podcast can be found here.

How to make a referral for PDA

Currently, if you wish to make a referral for a child/young person for PDA to be considered there are three pathways in to the Specialist Assessment Service:

1 –If your child has never had an ASD assessment (by the Specialist Assessment Service or another assessment service)

If you have never had an ASD assessment by the Specialist Assessment Service you would need to complete the standard referral form (Specialist Assessment Service Referral Form) to the service.  The referral will be processed as all referrals are.  If the referral is accepted, a member of the team will be assigned to lead the assessment, with other members of the multi disciplinary team contributing to the assessment, chosen depending on the needs of your child. All members of the team have the relevant skills, knowledge and experience to consider a young person’s profile of needs and whether they might fit with the description of PDA. If this is the case, this will be shared during the feedback session.

2 – If your child has previously been assessed by the Specialist Assessment Service and was not given a diagnosis of ASD

If you wish for your child to be reassessed by the Specialist Assessment Service there is a review process in the service. You can make a referral for a review using the standard Autism Spectrum Disorder referral form.

The following criteria needs to be met for re-referrals to be accepted;

• Minimum of two years since previous Specialist Assessment Service assessment
• Evidence of a change in the child’s presentation since the previous assessment
• Evidence of what support has been in place since the previous assessment, and the impact of this support.

3 – If your child has previously been assessed by the Specialist Assessment or another assessment service and has received a diagnosis of ASD

Please note that if your child was assessed by the Specialist Assessment Service in January 2022 onwards, the assessment completed will have considered a PDA profile of ASD as part of our routine assessment process. If this type of profile of need was identified during your child’s assessment this will have been explained as part of the outcome and recommendations made in the report.

Therefore, we are unable to see children assessed in this time period for further consideration of a PDA profile. The only exception to this would be:

• If your child was very young when they had the initial ASD assessment with the Specialist Assessment Service, in which case we would consider this on a case-by-case basis.
• If your child was assessed for ASD in another service (e.g. private assessment or another geographical borough). Again, this would be considered on a case-by-case basis.

If your child has a diagnosis of ASD and you wish for a PDA profile to be explored (after consideration of the above criteria) you will need to follow the steps below.

Referral pack

Please find below the referral pack that we require when you reach the point of making a referral to consider a PDA profile. This is only for those children/young people who have previously received a diagnosis of ASD.

If you make a referral we need the following paperwork:

Specialist Assessment Service forms

• PDA referral form – It is important that details of all services and professionals involved are included in this form with contact details, so that we can contact people for more information from them if we need it. This can be completed by a parent/carer or a professional involved.
• Information from parents and carers – PDA – This needs to be completed by parents/carers
• Information from professionals – PDA– This needs to be completed by professionals supporting the child/family, for example, School/Solar/Social Care

Please also include any relevant documents already held by professionals/family, for example:

• Education Health and Care plan, if there is one
• Cognitive / learning assessments if applicable
• Reports from Health services involved
• Report confirming ASD diagnosis (If assessed elsewhere)

Please send all of the above information together to:

Specialist Assessment Service

Chlemsley Wood Primary Care Centre

Crabtree Drive

Birmingham

B37 5BU

Once this information is received it will be reviewed and if accepted your child will be placed on the Specialist Assessment Service waiting list. You will be notified of this, or if further information is required / the referral is not accepted.

Assessment to consider a PDA profile usually involves gathering information from those involved in supporting the young person. We know that, if a person is likely to have a PDA profile, putting them through more direct assessment will be very difficult for them and is unnecessary, therefore we usually do not meet with the young person directly as part of this assessment.

We would recommend that whilst waiting for this assessment, families follow advice available via the PDA Society website PDA Society – Pathological Demand Avoidance. It is important that PDA support strategies are trialled as this will provide further evidence as to whether or not a PDA profile is an appropriate description of your child’s needs.

 

Please note, we are currently reviewing our PDA pathway to improve efficiency and thus ensure children/young people and their families are able to gain a more thorough understanding of their strengths and needs more quickly. Thus, it is likely that there will be changes to the assessment process and referral requirements in future. Please do refer to the website prior to making any referral to ensure you are completing the most up to date paperwork.

 

Questions

For further help and advice when considering making a referral for consultation about possible PDA, please feel free to contact the Specialist Assessment Service on 0121 722 8010 and a clinician will contact you to answer any questions you have.