At least one in four people experience a mental health condition at some point in their lives. Research evidence suggests poor mental health may be more common in autistic people, compared to non-autistic people. Here, we focus on psychosis: what this is, why some people might develop psychosis and what interventions autistic people and their families may find helpful. We also identify some of the ways in which health professionals can tailor their approach when working with autistic people who have psychosis.
Mental health conditions can feel frightening, upsetting and stressful. They can also result in withdrawal from social activities, isolation and loneliness. Importantly, there are a range of effective interventions to treat mental health conditions, and their impact.
What is psychosis?
Psychosis is a term used to describe when a person loses touch with reality. There are two main types of symptom; positive symptoms and negative symptoms.
Positive symptoms of psychosis include:
- Hallucinations. These are experiences that seem very real to the person but originate in the mind. The most common examples of hallucinations are hearing voices or seeing people or images that others cannot see. Voices can say kind, critical or angry things. Voices can talk to the person, about the person or provide a running commentary on what the person is doing. Some people may also experience smells, tastes or other sensations in the absence of external stimuli.
- Delusions. These are strongly held beliefs that others do not share and that are out of keeping with the cultural context the person is living in. These beliefs are not based on facts, although they can seem very believable to the person. Common examples of delusions include beliefs that other people intend to cause the person harm, that other people are monitoring the person, that the person has special powers or that they are receiving special messages.
- Disorganised thinking and speech. This is when thoughts and speech can become confused or jumbled. The person may jump from one topic to the next, without there being clear links between topics. They may also use made up words (neologisms) or repeat themselves. Some people may think that others are controlling their thoughts, reading their thoughts, or putting thoughts into their mind.
These are called ‘positive symptoms’ because they refer to additional experiences the person has when they become unwell.
Negative symptoms of psychosis include:
- Reduced interest in activities, hobbies and interests.
- A lack of energy.
- Poor motivation.
- Poor self-care.
- Being less emotionally expressive.
- Talking less.
These are called ‘negative symptoms’ because they refer to behaviours or experiences that are reduced when the person becomes unwell.
How common is psychosis?
About 3% of people will experience psychosis at some point in their lifetime, although many will experience psychotic symptoms only very briefly. Some people may only have one episode of psychosis and go on to fully recover or only experience mild symptoms. Some people have repeated episodes of psychosis with periods of being well in between. Some people continue to experience symptoms.
What sort of psychotic symptoms a person has, and how distressing they are, varies from person to person. This can also change over time. Some people feel comforted or reassured by aspects of their psychotic experiences (for example if they hear voices that are encouraging or saying kind things). But for many people, psychotic symptoms can be confusing, and highly distressing.
What causes psychosis?
There is no single cause of psychosis. Scientists continue to investigate what leads people to become unwell. However, there is a general consensus that the following factors can make people more vulnerable to developing psychosis:
- Genetic factors. Some research evidence suggests specific genes are linked to psychosis. But for most people, it is important to consider other factors as well as genetics, and how these combine together.
- Trauma. Many people who develop psychosis have experienced significant traumatic events in their lives. It is thought trauma can increase vulnerability for psychosis. However, this does not mean that everyone who experiences trauma will develop psychosis.
- Dealing with high levels of prolonged or acute stress can increase the risk of psychotic symptoms. This is especially the case if the person does not have good support around them and if they feel powerless to make changes and improve their situation. Stressful events can include things like bereavement, illness, the ending of a relationship or loss of employment.
- Drugs and alcohol. There is good evidence that taking street drugs, especially cannabis and hallucinogens, increase the risk of a person developing paranoia and psychosis. Drinking too much alcohol very regularly can also increase the risk of psychosis for some people.
- Specific physical health problems. Psychosis is associated with some health conditions, including specific infections, brain injuries or tumours, dementia and some hormonal disorders.
- Post-partum psychosis. In very rare cases, women can develop psychosis (called post-partum psychosis) following childbirth. This is thought to be partly related to changes in hormone levels and disturbed sleep.
Supporting a person to understand factors that may explain why they have developed psychosis is an important aspect of any treatment plan.
Assessments for psychosis in autistic people
If there are concerns an autistic person may be experiencing psychotic symptoms, it is important they are assessed by a skilled health professional, such as a psychiatrist, clinical psychologist or mental health or learning disability nurse.
An assessment usually involves asking the person lots of questions about their experiences. If the person agrees, talking to family members or other people who know them well can also be very helpful.
The assessment should take into account the person’s autism so that the process is adapted to meet their communication and sensory needs (there are more suggestions about how to set up and conduct appointments in the section on Psychological Therapies).
Helpful approaches to completing assessments:
Make sure questions about the person’s experiences are clear and concrete. For example, when asking about hearing voices, clarifying that the question is about hearing voices when no one else is present and the radio or TV are not on in the background.
Consider the range of symptoms
Ask questions about a full range of symptoms. Autistic people may not realise that information is relevant or of interest to the health professional, unless they are asked a specific question. For example, if there is a question about unpleasant voices, the person might not think to share that they also hear supportive voices. Using checklists or sorting cards of symptoms so that all areas are covered might be helpful, especially as autistic people may sometimes experience more unusual symptoms, such seeing people turn into animals.
Don't make assumptions
If someone is behaving in an unusual way or expressing unusual beliefs, explore the reasons for this, rather than assume this is associated either with autism or psychosis. For example, if someone has covered up a window, this could be a way of managing light sensitivity, or it could be that they are trying to manage distressing beliefs about people spying on them.
Focus on rapport-building
Autistic people can be very open and honest about their experiences when asked the right questions. But as with anyone who has psychosis, they may be reluctant or frightened to talk about their symptoms. Health professionals should consider how best to help the person talk about their experiences. This might involve taking a bit longer than is usual to get to know the person and develop some rapport. It is often important to explain why it is helpful for others to understand as much as possible about their experiences, and to give the clear message that health professionals will not judge them.
Leave space for social communication differences
Social communication and interaction differences can sometimes mean autistic people do not respond to or describe psychotic symptoms in the same way as non-autistic people. For example, an autistic person might experience a lot of distress, but this may not be reflected in their facial expressions or tone of voice, and/or they may find it difficult to articulate this. Sometimes autistic people can use very formal language to describe their psychotic experiences, which can make it sound as if they are reciting symptoms from a text book rather than describing their own experiences. This means health professionals need to ensure they have time to get to know the person and their communication style, including how they express distress.
Every autistic person is different
It is therefore important to establish what the person was like when it is certain they were well, in order to work out if there have been changes in their presentation. For example, if someone had previously been very sociable, but then started to avoid social interactions, this could be of concern. But if someone has always preferred to be by themselves this may be less relevant.
Health professionals need to think carefully about whether the person’s experiences or difficulties are related to autism, psychosis, both, and/or to other factors.
Overall, it is important that psychosis is not misdiagnosed, but also vital that health professionals do not miss signs of psychosis in autistic people.
What interventions can help to treat psychosis?
A range of interventions may be helpful for people experiencing psychosis. Specific clinical guidelines about interventions for psychosis are outlined in the ‘NICE guidelines for psychosis and schizophrenia in adults’.
Different interventions will be helpful for different people. The person should have time to talk about treatment options with a health professional; ideally at different points in their treatment pathway, as their needs and preferences may change. When working with autistic people, providing written information about possible treatments may help them understand and make decisions about treatment.
The most common interventions are:
Medication can be helpful for some people who have psychosis. Medication can be given orally in tablet or liquid form, or with injections (sometimes called a depot injection, if it is designed to last for a week or more). There is good evidence that antipsychotic medications can reduce symptoms of psychosis. Other medications may be prescribed alongside these, to help treat symptoms associated with psychosis and/or to treat possible side effects of the medication.
Conversations about medication should be conducted in a sensitive way. This should involve:
- Taking time to explain the rationale for medication, using language the person understands.
- Finding out what thoughts and worries people have about taking medication.
- Discussing the pros and cons of taking medication, and the pros and cons of different types of medication. Some autistic people can find it difficult to imagine hypothetical or abstract situations. It can help if health professionals offer anonymised examples of other people’s experiences.
- Making it clear that if a medication does not work or leads to problematic side effects, the prescriber will want to know and to work with the autistic person to find a better option for them
- It can also sometimes be helpful for the person to discuss medication with someone who has had experience of taking medication for psychosis, such as a peer support worker.
There is a possibility of side effects from any medication. The person should be advised about possible side effects and what to do if they experience any. Some autistic people find it difficult to recognise changes in their body (such as, if their temperature changes, or their heart is beating faster than usual or with an irregular rhythm). They might need some support with learning to identify physical sensations, and changes to these, to help them describe how they feel to others.
Autistic people may also be more sensitive to the effects of medication compared with non-autistic people. This means the dose of a medication, whenever possible, should be increased gradually.
Monitoring the effects of medication is very important. The person, and their family/supporters if appropriate, should be involved in identifying the symptoms the medication is intended to treat. This means they will be better able to monitor if medication is working. Some people might complete a standardised questionnaire about their symptoms.
Other people may find a purpose-made symptom rating scale helpful. Rating scales can have pictures as well as words. It might be relevant to measure behavioural changes as well as physical or emotional changes, such as identifying activities the person is more able to do as the psychotic symptoms reduce.
Psychoeducation and relapse prevention plans
Psychoeducation – providing information about a health condition, with the purpose of improving a person’s knowledge, understanding and capacity to cope with their health – is a fundamental component of treatment for psychosis. Research evidence indicates psychoeducation can lead to better treatment outcomes.
Psychoeducation can involve sharing information about what psychosis is and isn’t, and myth busting (such as about causes of psychosis).
It can also include developing a personalised relapse prevention plan. This involves identifying:
- What sorts of things can help the person stay well.
- What might trigger a relapse in their mental health.
- How they would recognise if they were starting to become unwell again (‘early warning signs’).
- What they or other people should do if they notice early warning signs.
- What things are like when they are really unwell and what helps in those circumstances.
The most effective relapse prevention plans include information from the person themselves, family/supporters and professionals. The completed relapse prevention plan can then act as a prompt or guide for the person and those around them, to help the person manage and monitor their mental health. Relapse prevention plans can be particularly helpful for autistic people, because of some of the difficulties in assessing whether someone is developing psychosis described earlier.
Sometimes health professionals provide psychoeducational sessions and sometimes people are given psychoeducational resources to read or workbooks to complete by themselves. Some autistic people will prefer the latter option, but most benefit from having the opportunity to discuss the information with a professional.
Many people who have psychosis can benefit from psychological therapies. Cognitive behaviour therapy (CBT) is the most widely researched therapy, with good evidence this can be effective for treating paranoia and distress associated with psychosis. CBT can also effectively target symptoms that co-occur with psychosis, including disturbed sleep, nightmares, anxiety, low mood and social worries.
Some research shows that other types of therapy, in particular, Mindfulness, and Acceptance and Commitment Therapy (ACT), may also be beneficial for people who have psychosis.
Ideally, therapists should have some experience of working with autistic people and of working with people who have psychosis, as occasionally some therapeutic approaches can be unhelpful. If therapists do not have much experience of working with autistic people with psychosis, it is important for them to seek specialist clinical supervision from health professionals with appropriate expertise.
Some people who experience psychosis also find arts psychotherapy helpful. Arts psychotherapy uses art, drama or music to help the person express themselves and understand their experiences. Arts psychotherapy tends to be more exploratory and less structured than interventions such as CBT and can be particularly helpful if the person finds it difficult to engage in more structured approaches.
Families can be a vital source of support for people with psychosis, but psychosis can have a significant impact on family members, as well as the person who is unwell. Families may feel worried and upset about seeing someone they care about experiencing psychosis. They may want to make things better and easier for the person but feel powerless to know how to do this. Family interventions are often recommended.
Family interventions is an umbrella term for lots of different therapeutic approaches, including general advice and support, psychoeducation, specialist therapy to help families to work together to problem solve and manage relationships, and sessions focusing on the family member’s own needs. Sessions might be held jointly with the person and their family, or sessions might just be for family members to think about their own needs.
Lots of people feel anxious about the idea of having therapy. They can worry about what questions the therapist will ask them, how to respond or what to do if the therapist suggests changes to their usual routines. This means there should be lots of opportunities to discuss any worries with the therapist at the outset and throughout the therapy, so these can be addressed.
Clinicians can adapt their approach for autistic people who have psychosis in a number of ways. These include:
- Offering regular and consistent appointments, such as at the same time on the same day, and around the person’s usual activities.
- Being clear about their role and responsibilities if other health or social care professionals are also involved.
- Ensuring the initial appointment letter provides information about who the person will see, what is likely to happen when they meet (such as what topics will be talked about) and the possible outcomes of the appointment.
- Offering to send a photo of the building where the appointment will take place and directions for how to get there.
- Ensuring the environment is not too sensorily overwhelming – checking if the person is bothered by light, sounds or smells and making sure that sensory information is minimised.
- Setting an agenda for appointments – clarifying if the person would find it useful to have the agenda in advance of meeting.
- Incorporating time to talk about preferred topics or interests at the beginning or end of sessions to help the person manage their anxiety or to support engagement.
- Spending the first few appointments finding out about the person’s strengths, preferences and needs.
- Explaining terminology, such as ‘hallucinations’, ‘anxiety’ and ‘distress’ and making sure the person knows it is okay to check if they are unsure of what something means.
- Writing key information down using accessible language.
- Exploring how the person identifies and scales emotions.
- Spending time developing a shared understanding of what might have made the person vulnerable to becoming unwell, what is helping or not helping them at the current time and their strengths or ‘protective factors’. This is called a formulation. The formulation should incorporate autism-relevant factors.
- Helping the person to identify goals they would like to work towards. The person might find it helpful to have conversations about the pros and cons of making changes. They may also benefit from support to develop anxiety management strategies to cope with managing changes and the short-term uncertainty associated with this.
- Offering skills-based strategies and practising these with the person. The person may need additional support to plan for or to practise using their skills in different situations.
- Being aware that some autistic people may require shorter, more frequent sessions, while others may require longer sessions, depending on their ability to concentrate and communication style.
- Being aware that the pace of therapy might be a bit slower than when working with non-autistic people and allowing additional time for this.
Support to engage with enjoyable and/or meaningful activities
Psychosis can have a significant impact on people’s daily functioning. People can find it difficult to study and work. They can withdraw from social situations and become more isolated. They may feel anxious about going out and being with others, including their family. This can have a significant impact on their quality of life and can exacerbate psychotic symptoms.
This means support to engage in activities is a key intervention. This could include support with activities of daily living such as shopping or cooking or leisure activities, or with accessing education or employment. Tailoring support for an autistic person could include:
- If possible, asking the same few support workers to work with the person across different activities, rather than allocating a new support worker for each activity.
- Asking about the person’s social functioning and preferences before they became unwell. The aim is to support them to work towards goals that are realistic, valued and meaningful for them.
- Finding out about the person’s hobbies and interests, and seeing if there are ways to help increase their engagement in these.
- Talking with the person about the pros and cons of doing more activity, and the pros and cons of keeping activity levels as they are.
- Making a plan for how to build up meaningful activities. This may involve introducing activities gradually and helping the person build their confidence.
- Checking out what the person thinks about doing group activities. Some autistic people feel comfortable in groups, but many don’t. Options to do activities on a one-to-one basis, at least at the start, may be preferred.
- Clarifying if the person has any sensory sensitivities that can be activated in social situations and finding ways to accommodate these (such as taking earphones or ear defenders with when going to a noisy place).
Peer support is where people with shared experiences (such as experience of psychosis) support each other. Peer support can be provided through support groups that focus on discussing and sharing experiences, groups where the focus is more on the social aspect of being together and engaging in enjoyable activities, or through one-to-one support. Peer support can help people feel accepted and understood, and less isolated.
How are interventions accessed?
Most people who have psychosis will receive care in the community, such as from a community mental health team. However, if there are significant concerns about the person’s risk to themselves or others, they may need to be admitted to a mental health hospital.
Mental health services should make ‘reasonable adjustments’ for autistic people. For example, considering any communication and sensory processing differences, and making adjustments where possible. In inpatient services there is also a process called Care and Treatment Reviews, which involves an independent panel reviewing the care provided to each autistic person and making recommendations regarding possible improvements or adaptations.
There is also a process under ‘Local Emergency Area Protocols’ (formerly called Blue Light Meetings) which is a way of bringing together all the professionals involved in an autistic person’s care so as to think about whether there is any way of avoiding an admission to hospital and helping the person to safely remain in the community.
Experiencing psychosis can be very difficult and distressing, but with the right support, many people recover, and those who do continue to experience symptoms are often able to find a way to live a rewarding and meaningful life despite these challenges.
It is essential that health professionals think carefully about the impact of autism when assessing and providing treatment for autistic people who experience psychosis, so that they can provide appropriately tailored support interventions.
Where can I find more information?
Information for people affected by psychosis
Mental health charities
Royal College of Psychiatrists: Guide about psychosis for young people: https://www.rcpsych.ac.uk/mental-health/parents-and-young-people/young-people/psychosis---for-young-people
British Psychological Society: Psychological approaches to understanding psychosis: https://www.bps.org.uk/what-psychology/understanding-psychosis-and-schizophrenia
Self-help books informed by evidence-based psychological therapies
Overcoming Paranoid and Suspicious Thoughts by Daniel Freeman, Jason Freeman and Phillipa Garety. 2016, 2nd edition.
Overcoming Distressing Voices by Mark Hayward, David Kingdon and Claudia Strauss. 2018, 2nd edition.
Care and Treatment Reviews https://www.england.nhs.uk/learning-disabilities/care/ctr/
Information for practitioners working with autistic people
BPS best practice guidelines for psychologists working with autism: https://www.bps.org.uk/news-and-policy/working-autism-best-practice-guidelines-psychologists
National Autistic Society good practice guide for professionals delivering talking therapies for autistic adults and children: https://www.autism.org.uk/advice-and-guidance/topics/mental-health/anxiety/professionals
NICE guidelines for Psychosis and schizophrenia in adults: prevention and management: https://www.nice.org.uk/Guidance/CG178
Stark, E., Ali, D., Ayre, A., Schneider, N., Parveen, S., Marais, K., Holmes, N., Pender, R. (2021). Psychological Therapy for Autistic Adults (1st digital ed.). Authentistic Research Collective. https://eloisestark.org/authentistic.html