Photo by CDC
COVID-19 is a new disease caused by the Coronavirus. Because the disease is new to humans and highly contagious, governments around the world are taking steps to limit the spread of the disease. These measures affect millions of people. Also many people with autism and families with a child with autism. Everyday life, sometimes difficult enough for people with autism, is drastically turned upside down and made even more challenging.
Below are some tips to get through these difficult times if you have autism or if you are a parent of a child on the spectrum.
Give information about the crisis and push the context button, especially the positive context
Do not make the uncertainty and fear greater than necessary. The corona crisis is accompanied by a great deal of uncertainty. Nobody knows how the disease and the number of infections will evolve, nor how long the current measures will last and whether and what new measures will come. Uncertainty and unpredictability already pose a major challenge for people with autism without the Corona crisis and now all kinds of new and unknown uncertainties are being added. When can I go (back) to school? Will I also get sick? Who in my environment can infect me? Will I soon be unemployed?
It is good to be informed, but make sure that the information about the pandemic does not unnecessarily increase the uncertainty. And try to avoid too much (negative) information.
A few tips:
- Avoid overwhelming children and young people with autism with all kinds of information about the pandemic. Messages come in all day long on radio, TV, but also on social media. Much of that news is one-sided negative (news agencies report every day about the number of new cases and deaths, but not always about how many people have been cured). There is also a lot of fake news circulating. If possible, limit the information about the pandemic to one or two – preferably fixed – moments per day. Watch TV together and listen to the radio together. And above all give context to all that news, so that children and young people get a nuanced picture and learn that there are still many things that are going well in the world.
- If you are an adult with autism: plan when you will get information so that you are not constantly confronted with information. Choose one or two times a day that you will be dealing with the news updates about the Corona crisis. Turn off push notifications on your smartphone so that you don’t receive information that you have to process all the time and at unpredictable moments. Take control of the information that comes to you and determine when, where and how much information you want to receive.
- Ask at regular times (for example, once a day) what questions children with autism have and answer their questions, but do not provide more information than they need.
- Give children a short and clear explanation about the coronavirus and COVID-19. My good friend Carol Gray wrote a Social StoryTM “Pandemics and the Corona virus”.
Dr. Siobhan Timmins, doctor, mother of a son with autism and also a friend of Carol Gray also wrote a Social StoryTM “Learning about the Corona virus” that you can use with children with autism.
- Use a neutral language. Avoid negatively charged terms such as dangerous, deadly, catastrophic, terrible as much as possible and replace negative terms with positive ones whenever possible. For example, talk about what you are going to do to stay healthy rather than what you are going to do to not be infected. Tell what kind of activities that are still possible and not just what is no longer allowed.
- Counterbalance all the bad news that is flooding us these days. Each night, identify 3 things that were positive or good that day. Examples enough. The sun was shining. The birds are chirping because it is almost Spring. The soup was tasty. If you have children (with autism), do this with the whole family. No matter how small, consciously thinking about the positive things and sharing them every day is the best vaccine against the “bad news virus”. And it is also a way of pressing the context button, because it places the unpleasant news in a wider context where fun and positive things also happen.
- If you do worry, schedule worry time and plan your day so to ensure that activities distract you for most of the day. It is also best to organize worry times for children and also plan moments to relax and distract your attention (see also the tips for free time).
Protect yourself and the others
Teach children the actions necessary to avoid contamination: washing hands regularly, keeping a distance, sneezing and coughing in the elbow.
Make all instructions autism-friendly by making them concrete and visual.
- The World Health Organization has many tips on its website in fairly concrete language and with lots of visuals. On the Internet you will certainly find instruction videos for hand washing, such as this one from John Hopkins Medicine with the World Health Organization’s hand washing instructions
- For children there are funny instructional videos for hand washing like “How to wash your hands song” from the NHS. There are also videos for coughing and sneezing etiquette.
- Some children and young people on the spectrum prefer logical and scientific information. It is easier to convince them to learn new behaviors with scientific facts than with emotional arguments (such as ‘we are worried about your health). For those there is this video from Mythbusters that tells why we should sneeze in the elbow.
- Standard instructions can be too vague, too abstract or too confusing for certain people with autism. Try to communicate as concretely as possible and make all measures clear and concrete with step-by-step plans and visual support. The World Health Organization has a visual roadmap for hand washing
For some children and young people, these visual instructions are still not concrete enough. For example, it may be necessary to use a concrete time indication (count up to 20) or a time timer to indicate how long the hands should be scrubbed.
Organize the ocean of free time that is now emerging.
People with autism love well-organized, structured activities. Empty time and too much non-organized free time are a torment for many children, young people and adults with autism.
Schools are currently being closed in many countries. The structure of every day is lost for many children and young people with autism. Going somewhere (the zoo, the cinema, museum, restaurant …) is also no longer possible. As a result, there is a lot of time that threatens not to be filled in, at least not in a predictable and structured way. Some young people with autism don’t mind that, because then they can play for hours or engage in Netflix binge watching. But that’s not such a good idea. Not only is there the risk of addiction, there is also the risk of a further narrowing of the world, which is already becoming more limited by the lock down measures.
A few tips:
- Provide support in these times of uncertainty by keeping as many daily routines as possible. These islets of predictability are needed now more than ever.
- Create and use a day schedule for children and young people with autism. Give them an overview of what’s going to happen and the overview as concrete and visual as possible. Give predictability but allow time for variation. And, if the child can handle it, make sure to offer choices. This way the child sees when it will be allowed to choose an activity and when not.
- Ask your son or daughter’s school if there are opportunities to perform online school tasks. Ask the school to offer these tasks and activities.
- If you also have to stay at home as a parent, start teaching your children. There is plenty to learn and learning can be fun. And it doesn’t have to be academic stuff you are teaching. This may be the time to teach your child how to make pizza, sort the laundry, fix something at home. Do something that has immediate results and that is fun.
- And maybe this is also the time when your son or daughter can teach you something, e.g. about gaming or social media. As a parent you can learn a lot from your children!
- The Corona virus creates a lot of anxiety and stress. So, a good moment to start with yoga or some other form of relaxation. You don’t have to go out for that. There are many apps for yoga and relaxation and on Youtube you will find hundreds of videos to teach yoga, mindfulness or other forms of relaxation.
- Keep coming out of the house and exercising. There is plenty of evidence that exercising for half an hour a day is not only good for our physical health but also for our mental well-being. Provided we keep sufficient distance from each other (1.5 meters), it is therefore perfectly safe to go out. Go hiking, cycling. Organize a photo search for your children where they have to find certain places or plants using photos. In this way, walking or cycling also has a purpose and a clear beginning and end. When all the items on the photo’s are found, we go back home. Autistic brains prefer closed activities (with a clear and predictable ending) to open activities, without a clear goal and end point.
- The best way to become happy is to make others happy. Current measures results in many older people no longer being allowed to have contact with other people than their care takers. Many of them are likely to become lonely. Make nice cards with your child (ren) for the elderly and people who are in the hospital. If your children don’t like to draw, have them make a funny video that they can share with grandparents via Whatsapp or Facebook. Or go and bake cookies and hand them over to the home for the elderly nearby. Or let your son or daughter create a “feel good” playlist on Spotify for family, friends and neighbors. Give children and young people with autism the feeling that they can make the world a better place in these times of crisis and that they can make a difference. And at the same time, a lot of free time will be filled in.
- If you are an adult with autism who is suddenly confronted with a lot of free time, ask family, friends or via social media what you can do to help. For example, you might be able to teach a grandpa or grandma to Skype or Whatsapp, so that they can stay in touch with the (grand) children. Or you can do shopping for people who are quarantined. Or if you are someone who knows a lot about a certain subject or knows a lot of facts: make a quiz. The demand for alternative leisure activities will only increase in the coming weeks and months.
These are difficult times for all of us. Also for people with autism and their families. But we should never waste a good crisis. This is an opportunity for all of us to become more creative and inventive in supporting autistic people and their families. Let’s support each other and make the best of it.
Last personal note:
These are also difficult times for me and Autism in Context. All my presentations of the coming months have been cancelled. Such a pity that my contagious messages about ‘autistic happiness’ or ‘absolute thinking in a relative world’ cannot be shared. But I am working hard on a new website and will try to organize some webinars and online Q&A’s in the coming weeks. Stay in touch and keep on following me on Twitter (@peter_autisme) and LinkedIn.