A GOOD LIFE WITH AUTISM IN THE ERA OF CORONA

THE BROAGER TOP 10 TIPS FOR A GOOD LIFE WITH AUTISM IN THE ERA OF CORONA

Entire communities and the world as a whole, are currently in crisis because of the Corona virus. It started as a local outbreak in China, which developed into an epidemic, and now a pandemic – i.e. a disease that has spread from one area to several continents.

Normal everyday life is suddenly very different, and although for some people it might seem like a holiday, there are many people who have difficulty dealing with the current situation, and who just wish that everything was the same way as it usually is.

The Corona situation is difficult for everyone, but perhaps especially so for people with autism, since they can be overwhelmed by all these new impressions and sensory inputs, and who may have diffi- culty navigating in so much confusion and uncertainty. Feelings of confusion and frustration do not lessen, if the people around us also signal that everything is “difficult”, “dangerous”, or “frustrating” – or use other similar terms which may contribute to feelings of confusion and uncertainty.

At Broager we follow 10 tips, which we use to navigate towards and to maintain a good life with autism. We hope that the following top 10 tips can be helpful to you, or for someone you know and care about.

Kind regards,
Svend Erik K. Sørensen
General Manager

To download a PDF of the “10 tips for a good life with autism in the era of Corona”, scroll down to the bottom of this page.

1.   DO WHAT YOU USUALLY DO

Regardless of whether it is Corona or something else which is causing uncertainty, anxiousness, or imbalance, our most important advice is:

When everything suddenly is different, try to stick to doing things “like you usually do”, and attempt to do so as much as possible.

In other words, try to make sure that your daily activities are structured and carried out “like you usually do”, and do so whenever possible, and as much as possible.

2. DEAL WITH THE THINGS THAT YOU CAN, AND ACCEPT THAT YOU CANNOT DEAL WITH EVERYTHING

We must accept, that there will always be things that it is beyond our capabilities to deal with, and that we can’t deal with everything.

Our 3 rules of thumb are:

1. If there is something that you yourself can deal with – then do so.
2. If there is something that you need help or support to deal with – then ask for assistance.
3. If there is something that someone else can deal with for you – then let them deal with it.

We must have faith that healthcare workers are doing their very best, and that they do their best in their respectives departments, and in their respective countries. They are trained to do what they do, and they are doing a great job! Have trust in their abilities and in their goodwill.

The rest of us must concentrate on dealing with the things which are within our capabilities to deal with. The best way for us to take care of ourselves and of our loved ones, is by following advice and guidelines set by our respective National Boards of Health.

3.  MAKE USE OF A SUPPORT PERSON

If possible, make an agreement with one or more people who know you, and who you are comfortable with. Let this person help support you through this time with Corona.

4. AVOID NEGATIVE EMOTIONAL CONTAGION

When a person with autism is in crisis, the last thing they need is to be “infected” by other people’s negative feelings or emotions.

Many people with autism experience what is called “negative emotional contagion”. This basically means that the person is “infected” by the feelings and emotions of others, and subconsciously ex- perience these feelings and emotions as if they are their own.

Emotional contagion can come from those you socialize with, from people around you in the su- permarket, or from various social media such as Facebook, where people’s posts or comments may reflect strong emotions or feelings. This may mean that you feel a feeling of frustration or “feeling of sadness”, without being able to place where it is coming from, and that you may experience this feeling as your own. As a person with autism, it can be difficult to define where these emotions come from, or how to ask other people to stop expressing their negative emotions or feelings. Setting personal boundaries is often difficult for many people with autism.

That is why it is so important, that the rest of us are aware of how we can affect people with autism. We need to be aware of what we are saying and doing, and considering whether these actions might be having a negative effect on the feelings and emotions of others.

It may well be that we ourselves can handle talking about the number of deaths as a result of Coro- na, but this can result in unnecessary fear and anxiety in people with autism.

In some cases it may be necessary for a person with autism to avoid certain people, if these people infect them with negative feelings and emotions. For the same reason, it may also be a good idea to avoid fake news, such as those often found on social media.

And remember: just as negative emotional contagion exists, so does positive emotional contagion, where you can be affected by positive emotions – and this type of emotional contagion is often ben- eficial to people with autism.

5.  LIMIT INPUT – ESPECIALLY FROM SOCIAL MEDIA

As a follow-up to point 4 on negative emotional contagion, we strongly advise to limit input from all social media, such as: Facebook, Messenger, Snapchat, Twitter, text messages, and similar.

It can be a good idea to talk to a support person, and to make agreements about your use of social media. It could be that you allow yourself to be on social media from 4:00 PM to 5:00 PM, and that you also make an agreement on which media you will use, and how you will use it.

You can also make an agreement with a support person that they will be your information filter, and that they will inform you about information which is relevant to you – and nothing more.

6. NEGATIVE THOUGHTS, FEAR AND PANIC ANXIETY – DON’T DEAL WITH THEM ALONE, TALK TO SOMEONE ABOUT THEM

When we hear about something that is potentially dangerous, the part of our brain which is called the amygdala, is triggered into a state of alarm. When this happens this triggers one of the follow- ing 3 reactions:

1. Freeze
2. Fight
3. Flight

This applies to all people, and most often is especially relevant for people with autism. Anxiety can create negative stress, when affects our emotions and our way of thinking. This can cause us to overreact and to act in panic, which can lead to even more feelings of fear, stress, and panic anxiety.

This can result in a nocebo effect, where the negative things a person expects to happen, actually become true. For example, if a person expects to become ill – then a person can actually start to feel ill without actually being ill.

If you have feelings of anxiety or fear, we strongly recommend that you to talk to someone about these feelings, and that you do not try to deal with these feelings alone.

The person you talk to about these feelings, should be someone who knows you and who can advise you based on their knowledge about you, and based on facts. This person should be someone who can help you to sort through impressions and sensory input, and who can give you solid and objec- tive advice. We advise against talking with someone who may be just as anxious as yourself, since this increases the risk for negative emotional contagion, where you may be infected by their anxiety, negative thoughts, stress or panic.

It is true that Corona/Covid-19 can lead to serious illness, and in rare cases may even result in death. But if a person is normally in good health, and otherwise follows advice and guidelines from their country’s National Board of Health, then the far majority of people have only a minimal risk of in- fection.

7. FACTS FROM AUTHORITIES AND PUBLIC SERVICE CHANNELS

If you want to find information about Corona, then listen to the facts coming from official author- ities. This could for example be government press conferences, or news broadcasts from national broadcasting stations.

We know that it can be difficult, but you should try to sort through information in order to deter- mine which information is true, and which information is false. It can be a good idea to use a support person to help filter through information for you, and then only tell you information which it is nec- essary for you to know.

8. CREATING CONTEXT AND PLANNING AHEAD

Many people with autism need help to gather and sort through impressions and sensory inputs, in order to form a coherent and complete whole. They may also need help to make a plan A, B and C, and also help to implement these plans. Maybe this applies to you too.

Depending on your stress level, the help and support that you need may vary from day to day. This is why it is a good idea to choose a support person who can help and support you, based on your day to day needs.

9. USE VISUAL SCHEDULES TO CREATE STRUCTURE AND PREDICTABILITY

Try to avoid going into “zombie-mode”, and try to live your life as you normally do as much as possi- ble. Visual weekly and daily schedules can be very helpful, and as described in point 8, you may need assistance in making schedules and planning ahead.

Make weekly and daily schedules, and at different levels if necessary depending on your day to day needs. It can be a good idea to make weekly schedules based on the following 3 criteria:

1. Cannot do alone, and do not have the energy
2. Cannot do alone, but have the energy with assistance
3. Can do alone and have the energy, and without assistance from others.

With regards to ensuring predictability, it is a good idea to use the 10 W and H questions. It’s all about creating a framework which ensures predictability, so you know WHAT to do AND WHY, WHEN to do it, HOW to do, and for HOW LONG etc.

The 10 W and H questions are:

1. What am I going to do? (Content)
2. Why should I do it? (Purpose)
3. How should I do it? (Method)
4. Where should I do it? (Location)
5. When am I going to do it? (Point in time)
6. How long should I do it? (Time frame)
7. Who am I going to do it with? (Person)
8. How much should I do? (Quantity)
9. Who can I get help from? (Person)
10. What should I do afterwards? (Content)

Even if you have a weekly/daily schedule and a really good plan, things can still change. So it’s a good idea to also have a plan B and C, in case plan A doesn’t work out.

It can also be a good idea to make plans and agreements with yourself, as well as with others. For example, it could be an agreement you make with yourself that you will only watch the news at 6:30 PM, but nothing after that. And/or an agreement with yourself, that you will end the day by watch- ing an episode of your favourite tv series.

10. CULTIVATE POSITIVE ENERGY

We highly recommend cultivating positive energy. For example:

• Go outside every day, stay active, and get fresh air. You can consider using Melvin Kakooza’s Instagram fitness programme every day at 11 AM, or going for a walk, running, or bicycling.
• Sit in the sun in the backyard, on the balcony, or by a window with a book.
• Exercise your brain: Do Soduko, crossword puzzles, jigsaw puzzles, play solitaire, or card games such as UNO or 500, or similar.
• Talk to friends and family: Call, text, use Snapchat, Facetime, Messenger – or write a good old-fashioned letter. But make sure that this doesn’t create negative emotional contagion, as we mentioned in point 5.
• Take advantage of the extra time at home to do things that you enjoy. Immerse yourself in a game, and try to beat your past records. Watch the entire series of Friends, How I met your mother, Breaking Bad, Game of Thrones, Shame, Bob the Builder, South Park. Or start your own movie marathon and watch all the Harry Potter Movies or Lord of the Rings. You could also build with Legos, or paint Warhammer figures. The only limits are your imagination and your ability to enjoy life.
• Take advantage of the extra time to do household chores, which you don’t always have the time to do in your everyday life. Clean out kitchen drawers, tidy up in closets, cabinets and drawers.
• Be creative: Draw, paint, knit, or make origami.
• Learn a new language. There are many online options for learning a new language.
• Stream concerts, theater or dance performances. For example, from a National Theater or Dance Company, or similar.
• Listen to podcasts or audiobooks.

End every day with the 3 S’es. Pat yourself on the back, by writing down 3 “Small Sure Successes” that you have achieved that day. If you can’t think of any, then get help from someone nearby. No matter how small the achievement, it is always possible to find something positive which we can be happy about and proud of.

We hope that you can use our “Broager top 10 tips for a good life with autism in the era of Corona”.

Please share, if you think that they might also be useful or helpful to others. You can contact us at: forstander@broager-bo.dk

We wish good health and wellbeing for all during this time of Corona. Remember to take care of yourself and of your loved ones.

On behalf of the Broager Residential Home for Young Adults with Autism

Svend Erik K. Sørensen,
General Manager.