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: General booklet (pdasociety.org.uk)

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 dimension of ASD.  This is how services that assess for a possible PDA report PDA as an outcome.  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

The Specialist Assessment Service developed an assessment model to consider the possibility that a child/young person may have PDA.  This has been published and is freely accessible here.

An outline of the pathway can also be found here.

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:

A diagram can be found here outlining the key information summarised below: PDA Pathway

Please look at the options below and pick the one that relates to your circumstances so that you know which referral form and paperwork you need to complete/provide when making a referral for PDA.

1 – If you have never had an ASD assessment completed by the Specialist 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 you have previously been assessed by the Specialist Assessment Service and your child 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 you have previously been assessed by the Specialist Assessment and your child has received a diagnosis of ASD

If after receiving a diagnosis of ASD you wish for your child’s profile of needs to be considered as having an additional domain of PDA you will need to follow the process for the ‘assessment over time’.

What is the ‘assessment over time model’?

There are key steps and requirements in this part of the process.  The reason for all of these steps is to ensure that children/young people’s needs are understood and met, that any alternative explanations for the profile of needs is thoroughly considered, assessed and met and that families and professionals have time to use the PDA strategies (without this profile of need being confirmed) and that this becomes part of the evidence building on the benefit of confirming PDA as part of the clinical explanation for a person.

The steps below need to be followed before sending a request in to the Specialist Assessment service to request a consultation to consider if PDA needs formalising as part of the clinical explanation for the young person:

There is a local agreement in Solihull with education about ‘assessment over time’.  This means that assessment for a possible PDA is done indirectly with the child/young person by services and professionals already working with the person.  We know that, if a person is likely to have PDA, putting them through more direct assessment will be very difficult for them and is unnecessary.  Local health and education services have agreed to provide the Specialist Assessment Service with the following information as part of that indirect assessment:

• On-going observations; these are standard practice and are already documented.
• Assessments and interventions by other services.  We require information about other services involvement, their observations, interventions and their ideas about the potential explanations for the profile of needs that the child/young person is presenting with.
• Implementation of strategies over time as informed by an Education, Health and Care Plan (EHCP) if a child has one, a needs based plan, Individual Education Plan (IEP) advice and support that other specialist services give to school and family.  Evidence of the impact of these interventions over time.  In particular we are interested to know if someone has a diagnosis of ASD and the typical ASD strategies are ineffective.  This is because we know that if a person has PDA then the typical ASD strategies are not only ineffective but can result in deterioration.
• If all other strategies are unsuccessful, implementation of PDA strategies.  We have agreed in Solihull that this is key in ensuring that we build evidence of the benefit of confirming PDA as part of the explanation for the child/young person’s profile of needs.   We also wanted to ensure that needs were met in the absence of being able to confirm PDA as a profile of need.  Information, advice and support in using PDA strategies can be found by contacting the PDA Society.  If school have involved the Specialist Inclusion Support Service ASD Team, they will also be able to advise on PDA strategies because they have experience and training in this area.
• Referral in to the SAS for consultation to consider a PDA profile; not a referral for direct assessment.

A referral will only be accepted if:

• All steps above have been followed
• The profile of information provided indicates the need to consider PDA as part of the explanation.  This is important to note, because it is not guaranteed that if you provide all information that the referral will be automatically accepted to go to a consultation.
• All information is provided and the referral pack is completed

If the referral is accepted, the information will be reviewed in detail and members of the the young person’s network contacted to discuss information provided, consider what is in the child/young person’s best interests and to make a decision about whether or not PDA should then be reported as an additional domain.  If it is agreed that this is the case then we will write a report confirming this to be the case.

If the referral is not accepted this may be because:

• There is insufficient information provided
• The referral pack is incomplete
• We need more information from professionals
• From the information provided it does not appear that PDA is part of the explanation and it is clear that there may other explanations

If the referral is not accepted you will receive a letter it explain why it has not been accepted.  If it is because we need more information we will write to the people that we need information from.  We will not expect you to have to chase services and professionals to provide this information.

Referral pack

Please find below the referral pack that we require when you reach the point of making a referral. This is only for those children/young people who have previously been assessed by the Specialist Assessment Service and have previously received a diagnosis of ASD.  For all other referrals please use the standard Specialist Assessment Service Referral Form.

PDA referral pack covering sheet

If you make a referral we need the following paperwork:

Documents already held by professionals/services/family:

Observation paperwork; usually held by school

• Autism Education Trust observation sheet
• ABC observation forms
• Functional Analysis

Review meetings and documentation

• Individual Education Plan
• Needs Based Plans
• Termly planning meetings
• Education Health and Care planning meeting minutes
• Other

Reports from school including a copy of the Education Health and Care plan, if there is one

Reports from Health services involved

Reports from Social Care if involved

Specialist Assessment Service forms

• PDA referral booklet – 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.
• Signs & indicators of possible Pathological Demand Avoidance (PDA); Information from Parents/Carers
• Signs & indicators of possible Pathological Demand Avoidance (PDA); Information from Professionals supporting the Child/Young Person – This needs to be completed by professionals supporting the child/family, for example, Solar/Social Care/Early Help
• Signs & indicators of possible Pathological Demand Avoidance (PDA); Information from the Specialist Inclusion Support Service (SISS)/School – This needs to be completed by school/education provider/SISS team/s involved
• Extreme Demand Avoidance (EDA) questionnaire – This needs to be completed by everyone that has contact with the child/young person

 

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.