National Autism team update

We have created a dedicated National Autism Team to oversee a comprehensive set of NHS Long Term Plan commitments designed to give autistic people the chance to live healthier, happier, longer lives.

The National Autism Team is made up of two national speciality advisers who are psychologists from autism diagnostic services, and a national speciality adviser who is a general practitioner. We also have nursing, occupational therapy, research, policy and data leads, and programme management, project management and administrative support. Most importantly, we have autism and family carer lived experience in our team.

The expertise and experience of people with lived experience will be our biggest strength in getting it right for autistic people and their families and carers. Working closely with local system and stakeholder partners, we will put involvement and co-production at the heart of all we do, starting from within our own team.

National Autism Programme, Workstream 1: improving access to and quality of autism diagnostic pathways:

  • We have facilitated several task and finish groups with clinicians from across the country to understand autism diagnostic pathways for children and young people
  • We have identified barriers across the pathway that have an impact on waiting times and quality of service, and potential solutions to these
  • We met with our national Learning Disability and Autism advisory group to hear about their experiences of autism diagnosis
  • We are learning from research about what works well across autism diagnostic pathways for all age groups
  • We are planning to meet with family carer groups to hear about their experiences of autism diagnosis, and to gather their thoughts on what could improve the quality of these services
  • Using this learning we aim to:
  1. create an autism diagnostic pathway outline based on stakeholder and research feedback which aims to reduce waiting times and improve quality
  2. Further develop pre and post diagnostic support, and identify key components which improve outcomes
  3. Outline transition processes and look internationally at best practice models
  4. Work with commissioners to identify commissioning triggers and how to embed service improvements
  5. Commission ongoing research and new opportunities to develop understanding regarding best practice:

National Autism Programme, Workstream 2: Reducing health inequalities:

  • We know that autistic people are at an increased risk of certain health issues such as cardiovascular disease, epilepsy and mental health issues, therefore this workstream aims to reduce those inequalities
  • We aim to develop a ‘package’ of interlinked initiatives to help primary care pro-actively support autistic people. This may be through initiatives such as: specific health checks for autistic people; reasonable adjustments; medication reviews; and supported self-care.
  • Autistica and us have jointly commissioned Newcastle University to carry out research into specific health checks for autistic adults. Stage 1 includes identifying barriers and facilitators to primary care access for autistic adults. Stage 2 includes designing and piloting a health check for autistic adults in collaboration with autistic adults, relatives/carers of autistic adults and primary care health professionals. Stage 3 involves trialling the health check to explore its acceptability, feasibility and effectiveness in improving health related outcomes for autistic adults.

National Autism Programme, Workstream 3: Improving the quality of and access to mental health treatment and support:

  • In June 2020, our Specialised Commissioning team identified issues for autistic adults in secure inpatient settings and carried out an engagement exercise to find out more.
  • This engagement highlighted seven key areas across secure and non-secure hospital inpatient settings: 1) social and sensory environments; 2) listening to lived experience; 3) leadership and a culture of improvement; 4) workforce and training; 5) community and inpatient models of care; 6) health inequalities; and 7) diagnostic pathways and autism assessments in inpatient settings
  • This workstream has developed an Action Plan to oversee deliverables related to these seven themes.

National Autism Programme, Cross Cutting Themes:

  • We have developed a Learning Disability and Autism programme research strategy, to ensure that good quality research and innovation underpins everything we do
  • We have established a data and informatics working group, which will underpin the autism workstreams aimed at improving the availability, quality and completeness of autism data
  • We have identified workforce and training requirements across each of our workstreams, and are developing a strategy alongside partner organisations to address these.