Supporting Autistic People

11. Introduction

Autistic people with a learning disability are more susceptible to physical health issues.

Autistic people without a learning disability are at higher risk of mental health problems, including higher than normal suicide rates and die 12 years earlier on average, than the general population, with suicide being the greatest cause of this.

Overall, Rotherham’s rates of autism diagnosis are higher than the national average, with most of these being younger people. This may mean a lot of people, especially older people, will not have had a formal diagnosis. Over the next 15 years, a substantial increase in autism diagnoses is expected in the Rotherham area.

We have a duty to offer anyone with a disability reasonable adjustments, whether they have a formal diagnosis or not. If the patient tells you that they have undiagnosed autism or you believe that they may benefit from the support of the Learning Disabilities and Autism Team, you can still refer.

At The Rotherham NHS Foundation Trust, we want to ensure staff:

• are asking autistic people if they would like to be referred to the ‘Learning Disability and Autism Team’, or encouraging self-referral

• are making reasonable adjustments

• are equipped to deal more effectively with the particular needs of each individual

12. What is Autism?

Autism is a lifelong developmental disability which affects how people communicate and interact with the world. 1 in 100 people are on the autism spectrum (National Autistic Society).

Autism is a spectrum condition and affects people in different ways. One third of autistic people also have a learning disability. Some people will be able to live fairly independently - although they may need a degree of support to achieve this - while others may require lifelong, specialist support. Some autistic people do not have accompanying learning disabilities, but may still have specific learning difficulties, such as dyslexia.

How do I identify an autistic patient?

Autistic patients may have their diagnosis recorded on the Trust Electronic Patient Record system; Meditech as a special indicator. This special indicator should be a signal to you to find out more about how this affects that person, and to find out how you need to adjust care provision to meet their needs.

Autistic people may have been taught to conceal or minimise autistic behaviours in public. This ‘masking’ can cause high levels of stress and exhaustion. An autistic person who presents as ‘high functioning’ may become more ‘visibly autistic’ in times of stress, for example becoming nonverbal.

An autistic person could be a leading expert on nuclear physics but unable to remember to brush their teeth or clean their clothes.

Two key difficulties required for a diagnosis include:

• Social communication and social interaction challenges

• Restricted, repetitive and/or sensory behaviours or interests

Masking

Many autistic people hide their autism from other people in order to seem more ‘normal’. This is called ‘masking’. This process can be incredibly tiring, as the autistic person is consciously trying to do things that more neurotypical people may do automatically. This means they might be trying to hide their reactions to uncomfortable things, such as loud noises, bright lights, or being touched. They may be trying to actively focus on conversations, and consciously be trying to remember to make eye contact and make the appropriate facial expressions, while trying to stop any stims or anything that might be seen as ‘different’.

This effort might mean that an autistic person can seem ‘normal’, but if another unexpected event occurs, such as pain or a hospital visit, they might lose their ability to mask, or may become emotionally overwhelmed.

Social communication

Autistic people’s challenges can include:

• difficulties with interpreting both verbal and non-verbal language like gestures or tone of voice

• being unable to speak or have limited speech while other autistic people have very good language skills

• struggling to understand sarcasm or tone of voice

• taking things literally and not understanding abstract concepts

• needing extra time to process information or answer questions

• repeating what others say to them (called echolalia); this can sometimes be used to communicate generally, with learned phrases

• social interaction

Autistic people often have difficulty ‘reading’ other people - recognising or understanding others’ feelings and intentions - and expressing their own emotions. This can make it very hard to navigate the social world. Autistic people may:

• appear to be insensitive

• seek out time alone when overloaded by other people

• not seek comfort from other people

• appear to behave ‘strangely’ or in a way thought to be socially inappropriate

• find it hard to form or maintain friendships

Some autistic people are non-verbal, or selectively mute, meaning that they do not speak, or only speak in environments where they feel secure e.g. at home. Although a person may not use spoken word, there are plenty of other ways to communicate.

Sometimes resources can help communication with autistic people or people with learning disabilities. Please find some resources in the back of this folder, or use the resources in your area’s ‘Communication Station’.

Repetitive and restrictive behaviour

With its unwritten rules, the world can seem a very unpredictable and confusing place to autistic people. This is why they often prefer to have routines so that they know what is going to happen. They may want to travel the same way to and from school or work, wear the same clothes or eat exactly the same food for breakfast.

Change to routine can also be very distressing for autistic people and make them very anxious. This could include having to adjust to big events like Christmas or moving house, facing uncertainty at work, or something simpler like a bus detour that can trigger their anxiety.