Is it possible to get a ‘diagnosis’ of PDA?
When you’re wondering whether to seek a diagnosis for yourself or your child, it can feel like a huge and emotional decision.
If you’re reading this, you might already suspect that a PDA (Pathological Demand Avoidance) profile is relevant to you. PDA isn’t a stand-alone diagnosis. It’s considered a profile within the autism spectrum – a way of describing how autism presents for some people, especially in relation to how they manage demands and expectations. This means that if you choose to pursue a formal assessment, you are seeking an autism diagnosis. The professional carrying out the assessment may or may not describe PDA specifically within that diagnosis, depending on their familiarity with PDA and the approach they take.
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What is the purpose of an assessment?
There are many reasons people think about getting a diagnosis. One of the biggest is clarity. A diagnosis can help make sense of things – those challenging behaviours, the intense reactions to demands, the anxiety that bubbles under the surface. It gives a name and a framework to understand a person’s experience in a way that says, “This isn’t bad behaviour, and it isn’t your fault or theirs – it’s part of how their brain works.”
A good assessment will do more than name a persons ‘condition’ – it will describe their strengths and needs in a way that makes it easier to understand how they can be supported and given the best possible chance to thrive.
It is important to know that support at school, access to an appropriate education if the young person is out of school, social care support and reasonable adjustments at work are not dependent on a diagnosis. The Equality Act 2010 is clear that it requires schools and employers to make adjustments to remove disadvantages faced by disabled people, and this is not contingent on having a formal identification.
Assessments are not intended as ‘gateways’ to getting help (and in fact most UK legislation explicitly talks about need rather than diagnosis as a criteria for getting help). However in practice having a document that describes what you are experiencing and the help you need can open doors.
Should I get an assessment?
In an ideal world, the answer would be a straightforward yes. The understanding that a good quality assessment can bring is valuable.
The potential upsides...
- Having a diagnosis can give confidence to a person when advocating on behalf of themselves or their child. It can mean requests for support at school or work may be considered in a more serious and straightforward way.
- This information can also help parents, teachers or colleagues to use appropriate methods of support. Having certainty can help you adjust your or your family’s life and communicating needs and struggles can help relationships.
The potential downsides...
- A lack of awareness of PDA can mean that you or your child go through a stressful assessment process and not get identified even if you should have been.
- For some PDAers assessment is not an option as it can be too demanding. Some professionals report they are not able to assess a person, potentially because they aren’t using PDA approaches.
How do I go about getting an assessment?
1. Make an appointment with your GP
This is often the starting point of the process. The GP will ask why you think an assessment is necessary so arrive with specific and clear reasons.
If you are based in England, there is a mechanism called “Right to Choose”, which allows you to go privately (funded by the NHS) if waiting times exceed 18 weeks for an autism assessment in your area.
You can do this for both adult and children’s assessments, and this process also starts with a GP appointment, who can then refer you to a provider you have chosen that offers this service. You may need to explain to the GP why a Right to Choose referral is “clinically appropriate” in order for this not to be refused. To help answer this, some Right to Choose providers have information on their websites you can download, complete and take to your GP appointment with you.
2. Ask school to refer
If you are looking for an assessment for your child, in some regions schools can make a referral. It is usually the SENCO (Special Educational Needs Coordinator) who will do this. However, if they don’t agree to it, or they don’t have time, you can go to a GP to start the process yourself.
It’s important to know that school should not be delaying support if there is need until a diagnosis is received.
3. Private assessments
Some people who can afford to, opt to be assessed privately. They do this to speed up the process and so they can choose who is doing the assessment, in the hope that they can go to a clinician who knows about PDA. You can search our directory for details of independent diagnostic centres, but please note the PDA Society is unable to verify the quality of any of these services.
Provided the assessment has been conducted in accordance with NICE (National Institutes for Health and Care Excellence) guidelines (detailed here), and by a specialist autism team with age-appropriate expertise as defined in the NICE Quality Standards for Autism assessments, the outcome of the report and recommendations should be accepted by the local authority, which is ultimately responsible for support at school or at home.
4. Referral to NHS or private specialist
If you are concerned that your area doesn’t have the skills or awareness of PDA to identify or rule out this profile during the autism assessment requesting a referral to a NHS or private specialist via an individual funding request can be an option.
You can find more information about Individual Funding Requests in the NHS Commissioning Key Documents and the IFR process map 2023 from NHS England. It can sometimes be helpful if your local MP is able to support this request. If the request is refused you can usually appeal this decision or make a complaint.
What does a good assessment look like?
There are national guidelines for the assessment of autism published by NICE. Amongst other things these guidelines recommend an appointment within three months of referral and an assessment by a multidisciplinary team.
In practice there are great variations in what happens. However, it’s still worth knowing what the guidelines are as a detailed and comprehensive assessment is especially critical if you think you or your child are PDA, as it can take time for the clinician to see the emerging picture and to untangle the co-occurring conditions.
The key elements of a good assessment for a child or young person:
- More than one professional involved and sufficiently trained and competent people involved
- Direct observation of the child
- A detailed history from the parents or carers
- Information gained from more than one setting
The key elements for adults:
- More than one professional involved and sufficiently trained and competent people involved
- Where possible a family member, partner, carer should be involved
- School reports should be looked at, as well as evidence of current or past behaviour and early development
What can I do to prepare for the assessment?
1. Ask for information
Some questions you could ask: how long will the assessment be? How will it be structured? Will you or your child be given the clinician’s views at the end? Which reports should you bring or send ahead of the day? What questions will you (or your child) be asked (this gives you time to prepare and think about the questions).
Consider writing to the professionals involved to point out the ways you or your child might respond to the stressful situation, and what strategies can be used to help. Also ask for pictures of the buildings, rooms and the people doing the assessing. You could show your child these, or see them yourself, which could help limit anxiety.
2. Gather your evidence
Before the appointment consider gathering your thoughts and evidence and email it all over two weeks ahead of the assessment, along with any reports from other professionals, drawing attention to the bits that paint a picture of PDA.
What the email could include:
- A list of the autistic features that you or your child presents with. The National Institute of Care and Excellence (NICE) provides a list of possible features in children and young people here, and for adults here.
- Characteristics of a PDA profile that you or your child displays, ideally explained giving specific real-life examples. You could include a filled-out copy of the Extreme Demand Avoidance Questionnaire (EDA-Q). While not a diagnostic tool, it is being used by researchers as a guide to identify PDA traits and point to the need for further evaluation.
- Highlight coping mechanisms that you or your child employ to manage demands, such as making excuses, withdrawing from situations, or displaying heightened anxiety. Also emphasise the impact on daily life including friendships and relationships with teachers or colleagues.
- Evidence from someone else who can support your descriptions of challenges. Ideally this will be from a teacher, a healthcare professional, a colleague, psychiatrist, but the thoughts of family and friends can be useful too.
- Keep a diary about your or your child’s challenges to give an overview of a typical week or month. Note down what happened in the lead up to a challenging situation, how you dealt with it and what the outcome was.
- Provide any information or reports from previous assessments and document any conditions that you or your child has been diagnosed with or treated for.
- Make duplicates of your information so that you have a file to keep for your own records and one that you can share with professionals.
During the assessment
The aim at the appointment is to be specific and concise about your or your child’s strengths and needs, so practice what you might say before, backing up your points with some real-life scenarios when possible.
Below is what to expect during an assessment to prepare yourself and/or your child:
- The diagnostician will normally take a developmental history
- They will observe you (if you are being assessed as an adult) or your child. Normally they will be asking questions that are part of a diagnostic framework compiled to assess a person’s social communication style and other autistic features.
- The diagnostician will ask for details of the person’s experiences of home life, education, friendships, and work if they are an adult.
- They may carry out a general physical health check.
After the assessment
The diagnostician will tell you whether they think you or your child is autistic. They might do this on the day of the assessment, by phone on a later date, or in a written report that they send to you in the post and/or via email.
The report should give a clear diagnosis and a clear description of strengths and needs and recommendations for support, which is the most important part of the report. There should be an opportunity to discuss the report and its findings with a member of the team.
The wording describing PDA in your diagnosis may differ depending on which NHS Trust you are in, and on the clinician’s familiarity with PDA. In the practice guidance around identifying PDA professionals said that the ESCAP practice guidance encourages ‘personalisation and contextualisation’ of an autism diagnosis and the use of ‘specifiers’ to identify individual characteristics.
If the multidisciplinary assessment leads to the conclusion that a PDA profile is the correct explanation for an individual’s marked demand avoidance within their autism diagnosis, there is a range of terminology that is used in formulations, including ASD with:
- A PDA profile/a Pathological Demand Avoidance profile
- A demand avoidant profile/a profile of demand avoidance
- Extreme/pervasive demand avoidance
For more detailed information and resources, you can visit this guidance on identifying PDA
Do you want to deepen your knowledge of PDA?
We can help. We provide training to meet your needs whether you are a PDAer, a parent or a professional. All our training contains practical tools and the theory behind them – presented by people who understand the challenges you are facing. Many of our courses are CPD accredited too. You can find them here.