Pathological Demand Avoidance (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.
What is PDA?
It is not just demand avoidance!! All human beings avoid some things and this is typical. The demand avoidance is understood in the following ways:
- Anxiety driven need to be in control and avoid demands and expectations; own and others
- Avoidance of anxiety about conforming to social demands
- Escalating amount of resistance
- Different to typical ASD avoidance (which is asocial; walking away/withdrawing). Socially manipulative strategies can be used
- Explosive strategies have been likened to panic
- Need to consider in terms of what is developmentally appropriate
- Extreme outbursts in 60% of cases
- Lose temper and recover quickly
- Driven to follow an impulse, ambiguity and need to be in control
There are a number of additional defining clinical features:
Appearing sociable but with difficulties recognised by parents
- Can appear to be people orientated – this is due to a vigilance rather than a social need
- Can use social niceties
- Good eye contact and use of gestures and body language
- Know what strategies work with who
- Social approaches lack depth; confusion about level of response required – over power, oversensitive, over reactive
- Gravitate towards adults
- Uses adult scripts with peers
- Over-familiar with adults
- Uninhibited; lack of pride and shame
- Difficulties accepting obligation/responsibility
- Shock and confuse their peers by their behaviours which are often not developmentally or socially appropriate behaviours
Excessive mood swings, often switching suddenly
- Empathy on an intellectual level not a feeling level
- Can recognise but not share emotion/modify behaviour
- Ambiguity in mood – ‘Jekyll and Hyde’
- Low self-esteem and perfectionism result in the mood swings, which becomes a vicious circle because of how they feel after engaging in some of the more extreme behaviours
Comfortable (sometimes to an extreme extent) in role playing and pretending
- 1/3 confuse reality with pretence; not just mimicking
- Try to direct other person in joint play activities
- Benefit from use of puppets; an indirect approach to interacting and communicating with others and plays to the person’s strength in this area
Language delay, seemingly as a result of passivity
- Passive with striking catch up
- 90% catch up by age of 6 years
- More fluent eye contact and conversational timing than typical ASD
- Less difficulties with pragmatics (non-verbal aspects)
- Still literal and unusual content due to mimicry
- Difficulties with processing receptive language (what is said to them)
- Fluency strengths masks the difficulties that the person may have in understanding what is said to them
- Demand avoidance is obsessive
- Can be related to people in a variety of ways:
Sensory processing difficulties
Co-morbid neurodevelopmental difficulties
- Crawling can be late/absent
- 1/2 have a delay in learning to sit
- Flitting when demands are made
Key indicators in the early years
- Early avoidance of demands in first three years; either passive baby or the baby that has problems with physical contact, feeding, toileting etc.
However, it 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 an ASD. This is how services that assess for a possible PDA report PDA as an outcome. It is not reported as a diagnosis.
- Some developing evidence that it may not just be a dimension of autism, but may also be dimension of personality; forensic research that is being published is suggesting this.
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
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 option 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 assessment completed by the Specialist Assessment Service
If you have never had an 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 all clinicians in the team have received training and have access to Dr Summerhill for consultation when considering if PDA is an additional domain as well as completing the assessment for possible ASD. If during the assessment your lead clinician believes that your child has sufficient features of PDA to consider this as an additional domain to an ASD then they will diagnose ASD and will make reference to the demand avoidant features. The ‘assessment over time’ model will then commence.
2 – If you have previously been assessed by the Specialist Assessment Service and your child was not given a diagnosis of an 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 an ASD
If after receiving a diagnosis of an 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 the need of a diagnosis) 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 meeting 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 is 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 he 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 diagnosis. 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 multi professional and family meeting 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 meeting stage.
- All information is provided and the referral pack is completed
If the referral is accepted then a meeting will be arranged to include family and all professionals and agencies involved to discuss information provided, consider what is in the child/young person’s best interests and to make a decision about whether or to 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.
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.
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
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 is detailed 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 Sevice (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
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.
- How to make a referral
- Waiting for your assessment
- What will happen at the assessment?
- What happens after the assessment?
- Service Feedback from Children, Young People and Families
- Pathological Demand Avoidance
- About the Specialist Assessment Service
- Resources and Information for Children, Young People and Families
- Assessment Outcomes
- Complex Needs (CN) Team