Addressing the removal of a diagnosis
At a recent meeting with clinicians we discussed a new trend we are seeing – people telling them (and us) that their autism diagnosis was being ‘taken off’ their records to be replaced with something different. We heard several stories – all sounding something like this: a person received an autism assessment outcome. Within the written report, the clinician described a demand-avoidant profile (often referred to as PDA or EDA) as part of the person’s strengths and needs. Later, another professional indicated that this description would be removed, replaced, or no longer recognised within the record.
For families and adults, this can feel confusing and unsettling. On this page, we outline what national guidance says about autism diagnosis and record-keeping, what good professional practice looks like when clinicians hold different views, and what you can do if you are concerned.
Autism diagnosis and PDA profiles
NICE provides guidance for the recognition, referral and diagnosis of autism in children, young people and adults (CG128 and CG142).
- Autism in under 19s (CG128):
https://www.nice.org.uk/guidance/cg128 - Autism in adults (CG142):
https://www.nice.org.uk/guidance/cg142
NICE guidance focuses on diagnosing autism spectrum disorder using recognised diagnostic criteria (ICD or DSM), alongside a comprehensive assessment of strengths, needs and co-occurring conditions.
NICE does not set out a separate diagnostic pathway for “PDA” as a standalone condition. However, many clinicians describe a person’s demand-avoidant profile within autism as part of a detailed formulation. This reflects an understanding of how anxiety, perceived demands, social context and individual differences interact for that person.
NICE emphasises that autism assessment should include:
- A developmental history
- Evidence across settings and over time
- Consideration of differential diagnoses
- Clear communication of outcomes
- A written report
NICE has acknowledged ongoing stakeholder discussion regarding PDA and related terminology, reflecting that this is an evolving area of professional understanding:
https://www.nice.org.uk/guidance/cg142/resources/2021-surveillance-of-autism-nice-guidelines-cg128-cg142-and-cg170-9140525965/chapter/overview-of-2021-surveillance-methods
When professionals disagree
It is not uncommon in healthcare for professionals to hold different clinical opinions, particularly in complex neurodevelopmental and mental health presentations.
Where this happens, good practice usually involves:
- Reviewing the original report in full
- Undertaking a new assessment if needed
- Clearly documenting any difference of opinion
- Explaining the reasoning to the person or family
Importantly, there is a difference between:
- Adding a new clinical opinion, and
- Removing or rewriting a previous assessment outcome.
NHS England guidance on amending patient records states that amendments should be transparent, attributable and auditable, rather than involving the deletion of historical entries:
https://transform.england.nhs.uk/information-governance/guidance/amending-patient-and-service-user-records/
The Information Commissioner’s Office (ICO) explains that where an initial diagnosis was made and later findings differ, it may be appropriate for the record to include both, so that it accurately reflects the person’s care history:
https://ico.org.uk/for-the-public/your-right-to-get-your-data-corrected/
Professional standards also emphasise respectful working relationships between clinicians and clear communication where views differ (General Medical Council guidance):
https://www.gmc-uk.org/professional-standards/the-professional-standards/leadership-and-management/working-with-colleagues
Why this can feel so significant
For many PDAers, and for parent carers, having demand avoidance understood as part of an autism profile can be profoundly relieving.
Understanding demand avoidance as anxiety-driven and linked to a person’s nervous system response can:
- Reduce shame and self-blame
- Support more compassionate self-understanding
- Enable more effective low-demand and collaborative approaches
- Improve wellbeing and family relationships
When that formulation is questioned or removed without clear explanation, it can feel invalidating or destabilising. This is why transparency, careful communication and person-centred practice are so important.
If you are concerned about changes to a record
If you are told that a description of PDA or demand avoidance is being removed or replaced, you may wish to:
- Ask for clarification in writing
– What specifically is being changed (diagnostic codes, wording, report content)?
– Who is authorising the change?
– On what basis (for example, a new assessment)? - Ask whether the original full report has been reviewed.
- Request that, if there is a difference of professional opinion, this is recorded as an additional entry or addendum rather than the removal of earlier documentation.
- Request copies of your relevant records, including the original diagnostic report and current diagnostic/problem list.
These are reasonable requests grounded in published guidance about accurate and transparent record-keeping.
We have prepared a formal letter template that you can use to request clarification and ensure transparency if you believe a record is being altered inappropriately.
The letter refers directly to:
- NICE autism guidance (CG128 and CG142)
- NHS England guidance on amending patient records
- ICO guidance on accurate health records
Our approach
At the PDA Society, we recognise that professional understanding of demand-avoidant profiles continues to evolve. We also recognise that families and adults deserve:
- Clear information
- Respectful communication
- Transparent processes
- Formulations that support wellbeing
Where professional views differ, careful and collaborative practice helps to avoid unnecessary harm. If this situation affects you and you want to talk it through – you can find our support service here.