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COVID-19: Helping us to see change through the eyes of individuals with Autism and a learning disability

This week is Learning Disability Week (15 – 21 June) and the current Coronavirus pandemic has required us all to make changes to our daily lives and routines. Taking account of our own experiences and how we have had to adapt, we can also think about how change affects individuals with a dual diagnosis of autism and a learning disability.

In this blog Stephanie Nowell, an Occupational Therapist at Cygnet Wast Hills, shares her insight into the difficulties many have when there is disruption to their routine and structure. Lova Green, a Speech and Language Therapist at Cygnet Hospital Harrow also shares some top tips to help communication with people with autism and learning disability.

Coping with new routines, by Stephanie Nowell

Suddenly with little warning we have all found our lives have changed dramatically due to the current pandemic. We have experienced significant changes to our daily routines, hobbies and social interactions which can cause many to feel anxious, frustrated and uncertain.

Some of us no longer push ourselves out of bed for a set time or complete personal care routines until later in the day – we hear people say: ‘I am going to change out of my day pyjamas into my night pyjamas.’

Some find difficulties in work/home life balance due to the children being at home and trying to juggle work, children’s education and wellbeing. Some of us continue to work in the workplace as key workers, however changes still occur from social distancing, staffing levels, changes in job role to doing the weekly food shop on your way home after shift.

It is difficult to prioritise roles and put in place new routines around work and personal commitments. Developing new routines takes time to adapt for all of us and there is the added uncertainty of how long this will last before we can return to ‘normality’. Indeed adapting back to the ‘usual’ way of life and the familiar routines we had before is also now another task we are beginning to navigate. A level of anxiety and fear exists for many in society and we can expect people to struggle with mental health as a result of the pandemic and the changes we have all had to make.

This is an opportunity to reflect on our feelings around change and to put this into perspective of what it is like living with autism and a learning disability.

Individuals on the autism spectrum have difficulties adapting to change and rely heavily on routine and structure to support functioning and engagement. Routine give us a plan which in turn lets us know what is happening and when. It provides predictability and a sense of security. This may be around difficulties with the concept of time, following the days of the week, or may be sequencing of tasks to complete an activity, such as personal care.

In addition to autism many individuals have a learning disability which makes this pandemic even harder to understand. We know as a society we should stay at home as much as possible and practice social distancing. We miss our families, colleagues and the ways of life as we knew it. However, we understand the risks and are able to interpret the instructions to make sound and safe decisions for ourselves and others.

However this is difficult for vulnerable individuals with autism and a learning disability as they may have difficulties processing information and making sense of everything. Communication is often a barrier and it is important that we use individual preferred communication strategies which may be in the form of pictures, Makaton and/or social stories, to help explain the current situation and provide information to how this is changing their routines and outings in the community. It can help to provide reassurance to alleviate any associated anxiety and confusion.

Having a structure supports, motivates and focusses individuals to lead a balanced and meaningful day. Frustration and anxiety around not being able to carry out routine activities can lead to disengagement in everyday living, which over time is likely to have an effect of self-esteem and motivation. The vulnerable and those with pre-existing mental health are likely to be affected more by changes due to pre-existing difficulties with finding coping strategies. Further disruption may lead to increased feelings of loneliness and hopelessness, and potential self- isolation. It is our role as key workers to support individuals to limit disruption to routines where possible and to adapt activities to meet the current situation.

Many individuals with autism have sensory processing difficulties, meaning they may be over- or under-stimulated by external sensations. For some this makes social distancing easy as they already avoid contact and insist on personal space, however for others this is a difficulty as they may be compelled to enter into the personal space of others to seek contact and the various sensory stimuli including smells, tactile touch, and visual input.

As keyworkers and as society as a whole we should take this pandemic as a learning curve and use our experiences of changes to routines and limited social interaction to reflect on how it can be for some individuals at times without a pandemic.

We can use our experiences to empathise and to support individuals with more understanding due to what we have learned from first-hand experiences from our own lives and situations during the pandemic. We will adapt and make new routines, so let us use this experience to help and understand others who find change more of a challenge.

Communication is key, by Lova Green

Most people on the autism spectrum have difficulty communicating and interacting with others. They may have difficulty with initiating interactions, responding to others, or using interaction to show people things or to be sociable.

It is important to adapt the way we communicate to help support each individual’s needs. This can make or break the communicative exchange so these tips are designed to help communication:

  1. Use pictures, visuals and objects – put them in places that are accessible, both for reach and visually.
  2. Use environmental cues that are all around us and build on them. They can include pictures, logos, colours, noise and texture.
  3. Use your speech and voice – many people with communication impairment are still able to use their voice and speech. As a speaker be aware of the complexity of the language you are using.
  4. Language level – remember, if an individual has an understanding at a one word level, use one word.
  5. Adaptation – if you are not being understood, be flexible, adapt your message. Change the mode of communication – e.g. from verbal to picture.
  6. Face to face – make sure you are facing the person, be at their level and look at the person you are communicating with.
  7. Use your body and face – use facial expressions, body language and gesture as they all lend weight and cues to your message.
  8. Use touch – it may help individuals understand activities, people and places.
  9. Give time to process, understand and respond – the processing speed of some individuals may be impaired and they may need up to 10 seconds or more to process a message (count silently in your head).
  10. Check understanding – Don’t assume that you are being understood. Ask the person you are communicating with to repeat back what you have said or repeat the key points from the conversation. That way you can make adjustments if something hasn’t been understood.

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