How you see me matters: perspectives of autistic people using primary care services

Have you thought about the impact of your service on autistic people and their families?
What effect could your processes have on people’s anxiety, and how they communicate with you?

Increasing your awareness, understanding and skills

One of the main contributory factors that affects people’s experiences and outcomes from services is a poor understanding about autism among healthcare providers. This includes understanding:

• how autistic people feel
• the difficulties they face:
  • getting access to care
  • communicating when they do.

This work shows how people can see and feel things from a different perspective. There are a number of areas where making small changes and meeting existing regulations and standards can have a positive impact for autistic people using primary care services.

Training staff

Does your training meet the requirements of the regulations?

Autistic people have the right to expect that all staff in primary care:

• understand autism
• use that understanding to enable autistic people to use their services.

The Health and Care Act 2022 introduced a new legal requirement for providers. This is to ensure that all their staff are trained to understand autism at a level appropriate to their role. This is also a legal requirement to meet Regulation 18 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014. It includes:

• all health and care staff
• ancillary staff who may have contact with people with a learning disability and autistic people, such as administrative staff.

We want to see that training put into action.

Alongside any formal training, think about what else you can do to support autistic people who use your services, for example:

• making sure that staff are aware of anxiety and how situational anxiety may affect people
• being aware of how the environment may affect people and taking steps to reduce sensory overload
• understanding how your systems and processes affect autistic people
• providing reassurance and giving people enough time to speak
• just asking how you can help the autistic person to access your services confidently and reliably.

Taking a trauma-informed approach builds trust, collaboration and empowerment. This improves people’s access, experience and outcomes. Showing compassion and helping to reduce cognitive load, sensory overwhelm and other barriers to health care can really help an autistic person to feel supported.

Communication

Do you make reasonable adjustments when communicating with autistic people?

It’s important to understand that some autistic people may have very different communication styles and needs when communicating. Remember not to make assumptions. Make adjustments to allow autistic people to communicate in a way that meets their individual needs.

In line with the Accessible Information Standard, think about the different ways to support autistic people to hear and be heard effectively. This might include:

• supporting alternative ways to communicate. These could be written formats, or Augmentative or Alternative Communication boards or devices (AACs)
• using checking questions and active listening to make sure that autistic people have understood you and you have understood them
• allowing extra time in consultations to accommodate people’s additional communication needs and questions. An autistic person may have many more questions they need answered
• providing information in advance of appointments
• enabling autistic people to submit information before and after a consultation
• providing a written plan of action and information following a consultation.

Adapting your processes and environment

What adjustments could you make to the environment of your service or the way you do things?

The physical environment of a building or premises can have a huge impact on autistic people and their executive function.

Think about what you can do to improve access and be more welcoming to autistic people. Enabling and supporting people to ask for reasonable adjustments, like waiting in a quiet room for their appointment, can encourage them to seek medical attention earlier than they may otherwise have done.

To improve access to health care, consider:

• offering different ways to book appointments with clear instructions, such as by text, online form or email
• quiet or alternative waiting areas
• flexible or longer appointments
• allowing autistic people to make sensory adjustments, for example:
  • turning off bright lights and screens in waiting areas
  • wearing sunglasses indoors
  • wearing ear-protectors or headphones.

But it’s not just about what providers can do. Commissioners need to be creative and flexible when developing new services and ensure the views and choices of autistic people are central to new developments.

Improving autism diagnosis and support

Do people have timely access to diagnostic assessments for autism and support after diagnosis?

People need to be able to access diagnostic assessments for autism quickly and have support following a diagnosis. Integrated care boards should commission and develop services that support people to receive an autism assessment within the timeframe recommended in NICE Quality Standard QS51.

For healthcare professionals:

• think about how you identify that a person may be autistic. Remember that autism may present differently in different age groups, genders and ethnicities
• do you know how to refer that person for a diagnostic assessment if appropriate?
• do you know what support services are available once a person is diagnosed autistic?

It’s important to ensure people have access to these services so that their care is joined up and they feel supported.

Delivering joined-up primary care

Do you work together with other services to co-ordinate people’s care?

Thinking about the care in your area, is there more that you can do with other primary care services and ensure that the care for autistic people is joined up and co-ordinated? In particular, when:

• people’s care moves from one service to another, for example when a child transitions to using adult services
• care moves between adult services such as from community to inpatient services
• people move to a new area, which risks losing continuity of their care – or not receiving care at all.