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 three national speciality advisers, including psychiatry, psychology and General Practice. We also have nursing, occupational therapy, research, policy and data leads. Plus, programme and project management expertise, business 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, young people and adults
  • We have identified barriers across the pathway that have an impact on the quality of service delivery including waiting times and the potential solutions
  • 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 have met 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 feedback and research evidence which aims to improve access to and quality of the assessment process including reducing waiting times
    2. provide guidance on pre and post diagnostic support, and identify key components required to improve outcomes
    3. outline transition processes for 14-18 year olds and look internationally at best practice models
    4. provide guidance to commissioners including how to embed diagnostic pathway service improvements
    5. commission ongoing research and identify new opportunities to develop understanding regarding best practice

National Autism Programme, Workstream 2: Reducing health inequalities:

  • We know that autistic people experience greater health inequalities including cardiovascular disease, epilepsy and poor mental health. We are committed to reducing these by working with Primary Care and wider stake holders to improve access to health services.
  • 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.
  • NHS England and Autistica 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 checkto explore its acceptability, feasibility and effectiveness in identifying the health needs 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:
    • social and sensory environments
    • listening to lived experience
    • leadership and a culture of improvement
    • workforce and training
    • community and inpatient models of care
    • health inequalities
    • diagnostic pathways and autism assessments in inpatient settings
  • We have worked with our partners and people with lived experience to develop a sensory-friendly resource pack which includes resources to improve the sensory environment for autistic people.  This pack supports improvements across a number of the seven key areas identified above.

National Autism Programme, cross cutting themes:

  • We have developed an Autistic people’s healthcare information strategy to help to improve the information that is available about the health of, and healthcare received by autistic people in England.
  • 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 work of the autism team aimed at improving the availability, quality and completeness of autism data.
  • The demand for autism services continues to rise, requiring a workforce which is fit for the future. Identifying the workforce required and their training needs is essential and we are working with Health Education England to explore the opportunities for workforce development.