Raise awareness and make Pathological Demand Avoidance a recognisable diagnosis

PDA needs to be recognised in the UK as a specific, diagnosable condition and added to the diagnostic manual. This needs government intervention to pursue this. PDA has been recognised as a form of autism for over 30 years, yet getting a diagnosis through the NHS is a postcode lottery.

For my family we have been fighting for the correct diagnosis for ten years now and still we are left with no support. With PDA individuals can have better social understanding meaning (girls especially) they don't necessarily meet the criteria for a full autistic diagnosis. My daughter appears to socialise but it's surface socialability. I have been physically, emotionally and mentally abused by my fight for recognition. It should not be a post code lottery on whether or not you get help!

A diagnosis of autism should be made as soon as possible. We expect that any child or adult referred for an autism diagnosis should have their first appointment within 13 weeks as set out in the National Institute for Health and Care Excellence (NICE) Quality Standard. A new data collection was introduced in April 2018 to collect data on autism diagnostic waiting time and the results will be published for the first time this autumn.

Learning disability and autism are one of the clinical priorities in the NHS Long Term Plan, published on 7 January 2019. The Plan has a focus on supporting people with learning disabilities, autism or both by improving diagnostic pathways, reducing over-prescribing of medicines, and by ensuring people have access to high-quality care and support in the community.

The complexity of autism, and the multi-faceted nature of the needs of those on the spectrum, pose challenges to professionals and commissioners. The Government wants to ensure clinicians have the best possible knowledge and resources available for them to make recommendations on the care and management of children and young people on the autism spectrum in line with clinical guidance.

The Pathological Demand Avoidance (PDA) profile of Autism Spectrum Disorder has been identified relatively recently and we are aware that a professional consensus on its status is still required. The NHS is clinically led, and the Government should not and does not influence individual clinical judgement.

NICE is responsible for creating clinical guidelines on identifying, treating and managing illnesses. It publishes a number of guidelines that provide evidence-based recommendations for the diagnosis and management of autism in children, young people and adults, and for the prevention, interventions and service delivery for people with learning disabilities and behaviour that challenges. These can be found at www.nice.org.uk, by searching for ‘autism guidance’.

Individuals with features of behaviour that are seen in the autism spectrum but do not reach the ICD-10 or DSM-5 diagnostic criteria for definitive diagnosis, should be assessed using NICE’s clinical guideline [CG128], “Autism spectrum disorder in under 19s: recognition, referral and diagnosis.” This guideline sets out the recommended procedure for the diagnosis of complex autism and the appendix to the guideline describes a range of signs and symptoms of autism which includes demand avoidant behaviour. The guideline also states that as part of every autism diagnostic assessment a profile of the child's or young person's strengths, skills, impairments and needs should be developed so that it can be used to create a needs-based management plan, taking into account the family and educational context.

The autism strategy, Think Autism, published in 2014, recommends every clinical commissioning group commission a diagnostic care pathway for autism in its area. People considered to have a PDA profile should also be able to get support from their GP and a referral for a diagnosis if appropriate. We are reviewing our autism strategy to ensure it remains fit for purpose and we are extending it to include children.

Department of Health and Social Care

This is a revised response, published by request of the Department of Health and Social Care.