Managing COVID-19 Specific Fears
Some autistic individuals have shared that the uncertainty and the constant flow yet frequently changing information available during lockdown which evoked a sense of anxiety, apprehension, and unease amongst many people, is what they experience on a daily basis. The COVID-19 pandemic brought many unexpected and unprecedented changes to daily lives and routines rapidly. Research recommends that parents and professionals support autistic individuals for change by providing information in advance and gradually & slowly preparing the autistic individual for change, ensuring they have adequate time to process the information. However, with COVID-19 many parents and professionals were unable to prepare for change due to restrictions being implemented quickly. As we prepare for a return to the ‘new normal’, autistic children and young people and their parents and professionals continue to live daily with uncertainty about what changes the easing of restrictions will bring.
Some examples of the uncertainty faced by all include:
- uncertainty about the exact date schools will reopen
- uncertainty about the number of days children and young people will attend school
- uncertainty about how many students will be in a class
- uncertainty about how children and young people should behave towards each other with regard to social distancing, and
- uncertainty about new procedures that may be in place relating to hand washing and wearing of PPE when schools re-open.
The uncertainty also applies to accessing shared spaces in the community. What is certain is that many aspects of daily living will change when we all re-join community activities such as going to the park, going to the cinema, going to shopping centres etc.
It is very difficult to prepare for change when there is so much uncertainty as to what Government guidance will be and what we must adhere to, coupled with the fact that there is likely to be considerable variations in different community environments. Despite the uncertainty, it is important to explain to children and young people with autism that we do not have all of the Government guidance yet. It is also important to help autistic children and young people to understand why this is so, for example, the Government scientists need to ensure that COVID-19 transmission is under control before opening certain shared facilities in the community and that we must listen to scientists when they give us information and guidance about how to protect ourselves against the virus.
This information can be conveyed visually for example, through a social narrative and referred to regularly if the child or young person has questions about what the easing of restrictions or the return to the ‘new normal’ will look like. Click here to link to NI Direct and Gov.ie both Government guidance websites which are updated frequently.
When the Government announces more definite arrangements and information, this can be conveyed through a social narrative. Venues are likely to produce text-based and multi-media guidance about changes to their usual procedures. Accessing and reviewing these would be very helpful in supporting children and young people with autism respond positively to change.
Using A Visual System To Communicate Change
The use of visual supports to teach the concept of change in conjunction with a visual schedule is recommended. Initially, when teaching the concept of change, the parent or professional, should use a uniquely tailored change system to visually communicate positive changes, for example, changing a non-preferred activity to a preferred activity, or adding in a preferred activity to the schedule, or removing, thus changing, a non-preferred activity from the visual schedule. For a video with further information on how to use a visual system to communicate change Click here to view video called Using A Visual to Communicate Change.
By using a visual system to communicate change, the child or young person learns to manage small positive change before they need to generalise the skill when faced with a more significant and testing change. Once the child or young person is familiar with the visual system which communicates change, it can be used to communicate all types of change. Click here to view Symbols used to Communicate Change
Research recommends teaching emotional awareness and regulation strategies alongside teaching the concept of change to ensure the child or young person has coping strategies for when they encounter uncertainty such as change.
Emotional Regulation is a term used to describe a child or young person’s ability to effectively manage and respond to an emotional experience. Emotional Regulation is an important life-long skill. For further information on how to teach Emotional Regulation click here.
For more information on Breathing Exercises click here.
Using Cognitive Strategies
Parents and professionals can use cognitive strategies to support the child or young person diagnosed with autism cope with change and to manage their worries by thinking and responding to challenging situations in different ways. These strategies also help the child or young person notice and understand how their thoughts, behaviours and emotions affect each other.
With cognitive strategies the parent or professional breaks the challenge down into feelings, thoughts and actions, then teaches the child or young person strategies on how to replace the detrimental feelings, thoughts and actions with realistic ones. By using Cognitive Strategies, the parent or professional can teach the child or young person with autism that they are in control of their thoughts and they can choose which thoughts to tune into. It may help to compare cognitive strategies to changing the channel on the T.V. Thoughts impact on emotions experienced, which then impacts on the response. By encouraging the child or young person to adopt a helpful thought then repeat it internally, can change the emotional and physiological sensation experienced.
The parent or professional can start using this approach by helping the child or young person with autism identify red thoughts, green thoughts and thought challengers.
- Red thoughts are unhelpful. They deplete or take away energy, and prevent the child or young person from being brave. Click here to view examples of Red Thoughts.
- Green thoughts are helpful. They evoke energy and help the child or young person to be brave, even when a change or an alternative situation is challenging. Click here to view examples of Green Thoughts.
- Thought Challengers – these can be used to challenge the accuracy of red thoughts. They are a series of questions that parents, professional and child or young person can use to test how accurate a thought is. Click here to view examples of Thought Challengers.
Irrational fears about Germs, Health & Safety
Many autistic children and young people experience anxiety which may have been exacerbated by the COVID-19 pandemic. Children and young people with autism have spent an extended period of time isolating with adults who may also have been anxious about coronavirus and its impact. The daily Government announcements and extensive media coverage meant that everyone has been inundated with information relating to coronavirus, for example, daily reporting of the number of deaths and the lack of PPE equipment etc. In addition, discussions about Government guidance and ‘rules’ such as staying at home, avoiding contact with other people and washing hands frequently so as to avoid the spread of coronavirus is ongoing. Therefore, it is not surprising that a child or young person who already experience a high level of anxiety has irrational fears about germs and their health and safety during this time of uncertainty.
Examples of unhelpful irrational thoughts include:
- I am going to die from COVID-19
- I can not speak to anyone outside my house as they will give me COVID-19
- I can not leave my home as I will catch the coronavirus
Thoughts such as these are unlikely to have an evidence base. The autistic child or young person may catastrophise, over generalise, think in a black and white manner, filter out positive information and focus on negative information or think in an ‘all or nothing’ manner, which leads to unhelpful thoughts which cause anxiety, heightened emotions and unpleasant physiological reactions.
It may be difficult for the child or young person diagnosed with autism who has inflexible thinking to understand that figures reported in hourly news bulletins often refer to the entire country and that guidance by Public Health scientists changes daily as the risk of contracting COVID-19 lowers due to people adhering to guidance on how to stay safe. Teaching the child or young person strategies to manage irrational fears can be approached in a number of ways. For example
- remove or reduce the source causing the irrational fear and anxiety
- teach regulation techniques such as engaging in calming activities, yoga or deep breathing exercises, using calming resources, co-regulating with another person or animal and engaging in activities involving the child or young person’s special interest.
The use of social narratives is another well-known strategy effective for explaining that ‘rules’ have changed and that the child or young person’s behaviour or expectation must also change in response.
Many autistic children and young people respond well to facts and concrete information, meaning it can be useful to support the child or young person ‘test’ or challenge a thought to ascertain if there is evidence supporting it or if the child or young person with autism is distorting the evidence.
It can be useful to use the ‘Reality Check’ strategy to support the child or young person search for facts and concrete information. In relation to COVID-19, it may be useful to research the population of a country, find out how many people tested positive for coronavirus, find out how many people had no symptoms at all, and how many people died because of COVID-19.
Similarly, the child or young person could survey people they know well, to find out if they were affected by coronavirus. They could present their own research results visually, for example in a pie chart.
Parents and professionals should not tell the child or young person with autism that there is no risk, as this cannot be guaranteed. Instead the parent or professional should support the child or young person evaluate their thoughts, keep them in perspective and to react accordingly.
The child or young person can be prompted to ask self and answer for self the following two questions:
- ‘Have I overestimated the extent of the problem?’ and
- ‘Is the outcome really as bad as I am imagining?’
Working through a ‘Fear Ladder’
It may be helpful to gradually transition the child or young person back into school or back into shared public spaces post COVID-19 lockdown very slowly, especially if they are having irrational thoughts arising from COVID-19. Dr. Jed Baker refers to this as slow gradual exposure to the anxiety evoking situation and calls it working through a ‘Fear Ladder.’ This cognitive strategy encourages the child or young person to face fears, rather than avoid them.
It involves the parent or professional identifying all the steps involved in the child or young person facing their fear. It starts with the least fearful and progresses to the most fearful, and the child or young person works through each step or rung of the Fear Ladder.
- The initial rung or step might be looking at images of a familiar shared space in the community with the autistic child or young person.
- Subsequent rungs or steps might be planning a very short visit to the shared space is quiet or not busy.
- Gradually the time spent in the shared public space or the number of people in it can be increased.
- Coping strategies that the child or young person is already familiar with should be rehearsed and implemented during gradual exposure activities or outings.
- Small rewards can be built-in for being brave and tackling a rung on the Fear Ladder. Rewards are most effective if related to the child or young persons interests.
- It may be helpful to limit exposure to media sources to ensure that the child or young person is not inundated with information about COVID-19. Sources of information should be well chosen so that the information provided is factually correct and proportionate.
When using the Fear Ladder strategy, exposure to the fear is planned and introduced very slowly so that the child or young person has repeated opportunity with low levels of demand to become accustomed to the idea that they can access shared spaces in their local community or in school.
It can be helpful to limit the amount of time a child or young person spends worrying in the day. This may be limited to certain periods of the day so that fears do not become all-encompassing.
A symbol or word can be included on the child or young person’s visual schedule to indicate when it is time to think about the ‘worry’. This is a more realistic approach than trying to ensure the child or young person does not think about or worry about the ‘worry’ at all. This strategy also communicates that worrying is a very normal response for many people.
What the parent or professional wants to ensure is that the worry or the anxiety does not become too intense or too pervasive as this is more likely to impact on the child or young person’s daily functioning.
Worry Jars: can be used to help children and young people process and ‘deal’ with their worries. A worry is written down or drawn onto a piece of paper and placed in a Worry Jar. When the worry is placed in the Worry Jar the child or young person lets go of the worry. Some children or young people may find this difficult to do and may need to explore it further during scheduled Worry Time.
Books about Worry: ‘A Huge Bag of Worries’ by Virginia Ironside illustrates how powerful it can be to deal with worries one at a time with an adult. An actual bag for the worries can also be made to accompany the book and used in the same way as a Worry Jar.
Worry Dolls can also be used. The child or young person shares their worry with the doll who then takes the worry away.
Mindfulness can be used to help the child or young person remain in the present moment, to not engage in negative thinking about what might have happened in the past, or what may happen in future. Mindfulness empowers the child or young person to focus on a particular sensation and on own breathing or environmental stimuli, as a way of achieving this.
Grounding strategies are mindful based activities which support the child or young person manage unwanted negative thoughts and feelings. Grounding strategies enable the child or young person refocus their brain away from the fear or anxious thought and to immediately connect their mind to the present moment. These activities can be supported with visual resources.
Some examples of grounding activities include:
5-4-3-2-1: the child or young person with autism is taught to focus on 5 things they can see, 4 things they can touch, 3 things they can hear, 2 things they can smell and 1 thing they can taste. Click the link to view an example of 5 4 3 2 1 Grounding Exercise
Object Focus: either the adult or the child or young person collects items of special interest. The child or young person holds the item and focuses on the item. Initially the time spent engaging in this activity may be short but with practice time can be extended.
Separating from Parent Post Lockdown
Separating from a parent post-COVID-19 lockdown can be difficult for many children, but it can be even more challenging for children and young people diagnosed with autism as they have to manage the change to an entirely new routine and environment whilst also separating from their parent after an extended period of being together constantly. This can cause the child or young person intense anxiety with the fear experienced impacting negatively on the child or young persons ability to enjoy everyday life experiences such as attending school or accessing shared public space in the community.
Children and young people who are leaving home or separating from their parent and siblings, may:
- Fear something will happen to maintain the separation, for example, the parent will get COVID-19 and die
- Have scary dreams about separating from the parent
- Follow the parent around the house or cling to them when the parent tries to leave
- Feel unwell
- Have difficulty sleeping or eating
- Have an irrational fear of school or going into a shared community space without their parent or caregiver.
Strategies to Support a Child or Young Person Experiencing Anxiety About Separating From Parent Post Lockdown.
It can be helpful to begin exploring separation indirectly through play, reading books or using multi-media. For example, a young child’s toy could go to school and return home, visit a relative and return home, or go to work and return home.
Books with similar stories can be read to the child or young person. The child or young person could watch episodes of a favourite TV program where characters are temporarily separated from their parents or caregivers and reunited again. It may be helpful to explore how the character feels or what they did to try and feel better, and how they felt when they were reunited with the other characters in the story.
It might also be helpful to look at photographs or videos of times when the child or young person separated from their parent and enjoyed the experience, for example, when they went to a park with a friend, visited a Grandparent with an older cousin etc.
Preparing a child or young person with autism to separate from a parent is most likely to be successful when done gradually over time.
- Initially, the parent might separate from the child or young person for a very short period of time so the child or young person becomes familiar with being apart yet supported and having fun with another adult they are familiar with. The length of time the child and parent are separated can be increased gradually as the child or young person becomes accustomed to the situation and starts to understand and trust that their parent will return.
- It may be helpful to communicate, both verbally and visually, to the child or young person where their parent is going and approximately how long the separation will be. It is very important that the parent adheres to the time frame so that the child or young person with autism trusts the information they are given.
- When the child or young person is initially apart from their parent or caregiver outside of the family home, this should be to a preferred location or activity with low demands and where the child or young person is likely to enjoy the experience.
- The length of time the child is separated from their parent can be increased gradually and other locations can be introduced at a pace suited to the individual child or young person. It is important that the parent or caregiver tells the child or young person with autism where they are going and approximately when you will return. It may be best to avoid very precise timings as children and young people with autism can become intensely anxious if these timings are not adhered to. Click here to view Leaving a Parent
- Calendars can be used to show the child or young person in advance, when these separations will take place, for example, a picture of parent and Granny placed on the date the parent or caregiver will visit Granny or a picture of the park to communicate when the child or young person will visit the park with an older sibling but without a parent.
- A visual schedule such as a First/Then or First/Then/Next can be used to communicate what is going to happen and to provide predictability. It may be helpful to allow the child or young person with autism to have a familiar item that is a comfort to them at this time. Click here to view First/Then schedule.
- A name, photograph, or image can be added to the child or young persons visual schedule to indicate who is going to collect the child or young person at the end of the school day. It is important that adults are on time when collecting the child or young person at the end of the school day as their anxiety is likely to elevate as they wait to be collected.
- A social narrative can be created and used to remind the child or young person that the separation is temporary and that the child will see their parent or caregiver again when school is over. A social narrative can also be used to explain what the child or young person can do if they feel worried or upset.
- It is important that adults allow children and young people to communicate their anxieties about separating from a parent or key caregiver. They should validate the child or young person’s feelings and help them to identify strategies to manage change and to manage difficult emotions.
Separating From A Pet Post Lockdown
During lockdown some children and young people with autism may have established strong attachments to animals and pets. The parent or professional may also need to consider how to support the child or young person separate from a pet who may have been instrumental in providing emotional support and distraction during lockdown.
Similar principles as those mentioned in this resource are used when separating from a pet. The parent or professional can introduce the separation gradually and increase the period of separation time and across different environments. Visual supports can be used, such as a visual schedule, to show the child or young person when they will be reunited with their pet again. Pictures of the family pet can also be sent to school with the child as a source of comfort.
The Transition Back to School (Parent Perspective)
When introducing the transition to school it would be helpful if the child can initially visit a school with their parent or caregiver to become accustomed to the environment and the changes since they last attended school. Parents and school staff can collaborate prior to the return to school date to identify suitable routines, for example, agreeing where the parent will separate from the child or young person and who and where they can meet the child or young person at the end of the school day.
A preferred activity can be identified so that the child or young person can transition to something familiar and enjoyable on entering the school building or classroom. A resource of the activity can be used as a transition cue to help the child or young person understand where they will be going and what they will be doing when they enter school, therefore minimizing anxiety.
It is important that parents and are aware of their own emotional reactions when the child or young person with autism is preparing to leave the family home, as often the child or young person base their actions on what they observe their parent doing.
Parents should identify strategies to help them manage their own anxieties when initially separating from their child or young person diagnosed with autism. The parent could engage in deep breathing, focus on previous positive experiences in school or use Progressive Muscle Relaxation. It may also be helpful to establish a consistent separating routine, such as using a specific wave or a key phrase to highlight the sense of routine and familiarity.
Keeping in Mind Strategies
‘Keeping in mind’ strategies can be used to reassure children and young people that they are in their parent’s thoughts even when they are separated from each other. Parents could write a note and place it in the child or young person’s lunch box, place a family picture inside their book, or leave a possession with them throughout the separation.
It is important to acknowledge the child or young person’s efforts, no matter how small, as they negotiate the change of separating from their parent, for example, ‘I’m really proud of you for being brave even though you feel worried about going to school.’