Disclaimer: This resource provides information, not advice. Please read the full disclaimer at the end of this resource.
The measures to manage COVID-19 can make things difficult at the moment – especially if you are living with, or are supporting, a person with autism or an autism spectrum disorder (ASD). You may be worried about how COVID-19 will affect you, your family and the person or people you are supporting. This information includes some practical ways to help you support someone with an ASD during the COVID-19 pandemic.
GP practices and mental health services, including Child and Adolescent Mental Health Services (CAMHS), are still working. They are now doing a lot of their work via remote consultation. Try to contact your usual health professional if you have one. Many GP and mental health services are open, but some things may take a bit longer than usual.
If you need more urgent help:
- Call your GP for an emergency appointment (you can do this over the phone or by video).
- Call NHS111 for advice.
- Call your local mental health crisis line.
- Call 999 or go to your nearest A&E (accident and emergency department) if you need medical help.
- See the resources in the Online Support section for more options.
- Start with small amounts of simple information which you can repeat several times. Social Stories, Social Narratives and Easy-Read Information can help with this.
- Be positive and plan together how you will review this information – you can both play an important part in protecting yourselves - and other people.
- Plan something enjoyable to do after you review such information with the person with autism or ASD.
You can use these resources together:
- Mencap: Easy-read information about coronavirus (COVID-19)
- Surry and Borders NHS Foundation Trust: Explaining Social Distancing for People with Learning Disabilities (YouTube video)
- Think about how you have supported the person to manage changes in the past – and how you both managed it successfully.
- Be careful with your words, try to use them consistently, in the same way. For example, you could use ‘change’ or ‘difference’, ‘COVID-19’ or ‘the coronavirus’. This will help to avoid confusion or misunderstandings.
- Emphasise how some things will stay the same, even though other things will be different.
The following strategies may also be useful:
- Develop the new routine as soon as you can. You can have some fixed times for doing things during the day, even if there is ‘free time’ at other parts of the day. Diaries, timetables, lists and any other familiar supports will be helpful.
- (The National Autistic Society has some useful examples of visual supports that can help with this.)
- Consider using social stories, or social narratives, to explain the changes we are making and why they are happening.
- The National Autistic Society website has information and guidance on social stories
- Schedule in some activities the person can look forward to every day. These should be things that can always happen, even if their behaviour has been difficult.
- Schedule some time every day to talk together. You can share anxieties or worries and use it as a regular time to discuss any problems.
- Some young people with autism or ASD like to have a set date when you can, together, ‘review’ any changes. This can feel more containing than having no idea about when things might change.
- Children and young people, like ourselves, are getting an ‘overload’ of inconsistent information – as well as areas of almost no information. Try to understand what information they are aware of, where they are getting information from, what they understand, and what questions they have.
Most children and young people will be feeling anxious at the moment. You may have to deal with more powerful expressions of emotion – but try to understand these as reactions to the situation. And take into account that caregivers, people like yourself, are also likely to be feeling more anxious.
The Challenging Behaviour Foundation's guide gives advice for dealing with the kind of difficulties you might experience.
A hospital stay for any child or young person is normally anxiety-provoking. There is lots to deal with, such as:
- Changes to routine and the environment
- New support staff to get to know
- Reduced access to family
- The reason for the admission (either mental or physical health)
Uncertainty – the rules for visiting wards, or contact with families and carers, are constantly being reviewed.
The ward may need to make some adjustments for someone’s autism or ASD. These will have to balance the risks of infection for the young person, the staff and other people against the effects of separation from important people in their life, and how to stick to a routine. You might have to contact them through video conferencing or telephone, rather than directly face to face.
If you are worried about a child or young person’s safety, contact the local social services’ safeguarding services. You can do this through your local social services in working hours, the emergency duty team out-of-hours, or by asking any professional involved in the person’s care.
Some people with autism or an ASD will still be able to manage activities such as personal care, housework and taking medication without assistance or prompting. But without regular contact, they may need to be supported to keep a routine, get out for exercise once a day and stick to a healthy diet.
An adult with autism or an ASD might not seem particularly concerned about social distancing. But they will still feel isolated away from family, friends and support. This can be worse if they usually had paid or voluntary work that gave them a structure for their day.
They may also be at a higher risk of being exploited, with other people gaining access to their money or accommodation. You may want to ask them about this regularly, to make sure that they are supported and protected.
Autism and ASDs:
- The National Autistic Society champions the rights and interests of all people with autism and aim to provide individuals with autism and their families with help, support and services that they can access, trust and rely upon and which can make a positive difference to their lives.
- Contact a Family is a UK-wide charity providing advice, information and support to the parents of all disabled children. Free helpline 0808 808 3555.
- Research Autism is a UK charity dedicated to research into interventions in autism.
- The Challenging Behaviour Foundation provides advice, guidance and resources on managing challenging behaviour in children, young people and adults with learning disabilities
- The Royal College of Psychiatrists has some general information for parents, carers and families working with young people with Autism and ASDs.
Explaining COVID-19 and related topics to someone with autism or an ASD:
Easy-read materials about COVID-19 are available. These cover various topics, including self-isolation and social distancing, being tested for COVID-19 and handwashing.
General support for young people and their parents and carers:
- Anna Freud: Supporting wellbeing during Coronavirus outbreak
- MIND: Coronavirus and your wellbeing (for young people)
- MindEd for families: Information on young people’s mental health
- National Youth Agency: Coronavirus support for young people (factsheet)
- NSPCC: Advice and support for parents and carers
- Royal College of Psychiatrists: Information about mental health for young people
- UK Youth: Support for young people
- Youth Employment UK: Supporting young people through COVID-19
- Young Minds: Supporting your child during the coronavirus pandemic
Government advice for parents and carers:
- Supporting children and young people’s mental health and wellbeing
- Supporting vulnerable children and young people
- Local Government Association: Information on children’s services, education and schooling during COVID-19