By Dr Sonia Anderson, Principal Clinical Psychologist, Clinical Lead for ASC Assessment and Diagnostic Service and Autism and Mental Health Support Team.

The information on this page is a guide to help staff supporting people with autism through the Covid-19 pandemic. Its aim is to ensure that high quality care and support can continue to be given to people with autism during this time.

The current health crisis has increased confusion, fear and anxiety for everyone, and inevitably it will bring additional challenges. There may be a need for more considered solutions where people are used to specific routines and are unsettled by change.

  • If you are visiting, each time prepare them with how you may look different; explain why you may be wearing masks, gloves and aprons.

  • Be mindful of diagnostic overshadowing: This occurs when the symptoms of physical ill health are mistakenly either attributed to a mental health/behavioural problem or considered inherent to their autism diagnosis.  

  • Many people with autism can find it hard to identify, understand or express how/what they are feeling and if they are in pain. For example, they may say that they have a pain in their stomach when the pain is not there; may say the pain is less acute than you would anticipate; or not say they are in pain when they are. Some may feel pain in a different way or respond to it differently: for example, by displaying behaviours that challenge, laughing or crying, self-harming, or becoming withdrawn or quiet. If there are significant behavioural changes that cannot be explained a physical health check may be of benefit.

  • Many people with autism find it hard to generalise, so they may understand why they are having telephone consultations with their GP but may need explaining again why they are having telephone consultation with you rather than having face to face appointment. 

  • Prior to making contact ask how would they like to be contacted, telephone call or video (if means available), give them a sense of control with some decision making.

  • Explain what they may need prior to contact, for example pen and paper, quiet area to talk, maybe ask them to write what they want to talk about on piece of paper prior to the appointment.

  • If possible, prepare the client on what you are going to talk about.

  • If possible, provide a summary of your contact via email so it is clear and concrete for the client.  This also means you both have a shared understanding of what was discussed

  • People with autism may need a high level of advice on how to keep safe, and on how to cope with the challenges of the current crisis more generally.

  • They may still be seeking a lot of reassurance, normalise that it's ok to feel worried. Talk to them about what helps them to feel more relaxed. Do they have a structured plan of the day that can help? See appendix 1 for booklet to help with mental health/self-help book which may be useful to share.

  • Repetitive behaviours and special interests may increase at this time as it will provide structure; order and predictability, and help people cope with the uncertainties of daily life. They can also make a person feel more relaxed.

Many people caring for someone will already have contingency plans in place in case someone is unable to continue in their caring role. If there is not a plan in place, then it may be worth thinking about:

  • Talking to the person you support and involving them as much as possible in producing a plan and what to expect.

  • Writing down any key contacts (family, neighbours, friends or professionals) who can be called upon for assistance.

  • Writing down key information about specific needs, routines, things that are important to them which they may not necessarily share.

  • Ensuring that they have a health passport. This is useful for people with autism to have, even more so now.  If they feel unwell and require hospitalisation, the health passport is designed to help people with autism communicate their needs to doctors, nurses and other healthcare professionals. 

People with autism have a statutory right to have a social care assessment of need, if this is required, it should be supported. Together, with the client an agreed plan could be developed.

 

Reasonable adjustments are a legal requirement and is important to help the person attain a greater degree of independence and wellbeing.

  • Be clear and precise, words can easily be misunderstood. Some people with autism may not think to offer important information if they have not been asked directly. 

  • Do not rely on assumed knowledge, tone of voice or gesture.

  • Allow time to process information, to think through and ask questions especially before expecting a response.

  • When providing new and/or complex instructions, ensure any distractions are minimised, particularly background music or noise.

  • Structure the conversation. Tell them what you are going to talk about. Talk, then sum up and agree actions.

  • They may struggle with emotional language and understanding, recognising impact on others, recognising intentions of others and have a tendency to black and white thinking.  However, they may respond well to learning rules, psycho-education/guided self-help and structured tasks and home-works.

  • Consider the clients sensory needs and communication style whilst supporting the individual.

  • Where possible, make things visual (for example, speech bubbles and stick men is a useful tool to help them make thoughts a little more concrete).

  • Provide reassurance after meetings, for example, "thank you, everything you said was helpful and has given me a better understanding of your needs".