Meet Ronell
Ronell is 15 years old and was diagnosed with Autism Spectrum Disorder (ASD) when he was in elementary school. He loves to play outdoors, collect bottles in parks, and is learning to do handstands. Ronell lives with his older brother, Nate, and mother, Beth, in a major Canadian city. During some of the the COVID-19 pandemic, Ronell could not attend his junior high classes or swimming lessons, both of which he enjoyed. This was a hard transition for him, but his mother and brother explained it to him in a way that he could understand – that it wasn’t safe because he could get sick. News on the TV scared Ronell, especially when it showed pictures of sick people in hospitals or mentioned death.
When news came that services, businesses, and schools were going to be opening back up, Ronell was excited to go back to class and see his friends, but he was worried that if he did, he was going to get sick. Ronell’s behaviours were notably different when the first day of class came around. He refused to get dressed, eat breakfast, or go near the door. Ronell couldn’t express that he was anxious and fearful about returning to school, but Beth recognized that Ronell’s behaviours were related to how he was feeling. Beth wanted to promise him that he would not get sick and everything was back to normal, but did not feel comfortable doing that because she had read carefully their province’s briefings which said that new cases were still being reported and a future surge may require further social distancing and other measures. Also, there were certain businesses that were not opening until a later date. So instead, she invited the whole family to watch a video that health officials had put together about the vaccine rollout and the phased reopening of businesses and other parts of society. Afterwards, they talked about what it all meant for them. Based on the government’s plan, Nate and Ronell were back at school and Beth would return to work. For a week afterwards, Ronell kept asking the same questions about whether it was safe to go to this or that place. For a week, Beth repeated the same answers and was getting worried about whether Ronell was understanding her answers. Eventually, Beth started to ask Ronell those same questions, and he was able to field the questions himself: The doctors said we can go to the park as long as we social distance. Soon he was even reassuring his older brother and telling his mother that it was okay for her to go to work.
Once Ronell was no longer paralyzed by worries about going out and interacting with people, Ronell asked what he could do to help others. Beth offered the idea that they could write thank you notes to people who had helped others over the last months, like their family doctor and the teacher’s aide at school that video-called Ronell once a week. Ronell also had the idea to donate some of the money he got from collecting bottles to the Red Cross, so he too could help people who were facing difficulty. Because of the notes and the donation, Ronell felt proud that he was helping.
Entering into Routine
When it is time to get back to the routines that you and your family have been missing, children and youth with autism or intellectual disabilities may have a wide range of reactions. Perhaps they are ready to go to the library, play sports, or see their friends, and the transition will be easy. Alternatively, feelings of apprehension, anxiety, and fear may be experienced by young people as they continue to experience the ongoing pandemic. Your child’s response is going to be unique and will be influenced by your specific situation and their ability to adapt to circumstances. Research suggests that one’s ability to adapt to ‘normal’ life after a disaster is tied to how much direct impact the disaster has had on one’s family (Valenti et al., 2012). Regression and difficult behaviors may have emerged over the pandemic. Continue to try to understand the functions of your child’s behaviors so you and others can proactively attempt to address these challenges. Ask yourself the following questions:
- What is my child conveying when expressing challenging behaviors?
- Are they worried? Might they be feeling anxiety?
- Are they feeling ‘out of sorts’ after long days with less structure? Or are they perhaps worried about having to return to routine, or concerned over potential risk of acquiring COVID-19 if reintegrating in the community?
Dealing with your child’s anxiety may take time. Remember that they are not displaying these behaviors to upset you, but likely for various reasons that could include worry or difficulty managing what is going on around them or the uncertainty of the situation. Take time to try to understand the source of their concern and consider how that could be addressed or supported.
If you and/or your child are feeling overwhelmed by all that has and is happening, a professional in your community may be available to listen and provide steps for moving forward. You could contact your local Autism Society/Intellectual Disability Organization or look for resources on the AIDE Canada website. Later in this Toolkit, some mental health resources are offered that may be helpful.
In all of the changes and challenges of our time, be attentive to how your child is coping. Anxiety, sadness, sleeping and eating challenges, difficulty concentrating, and developmental/social regression, are common adjustment reactions to disaster found in the general population of children and young people (New York University Child Study Center, 2006). If your child is overwhelmed or having a very difficult time, discussing this with your service provider or family doctor may be helpful.
Different levels of understanding among some with autism or intellectual disability may make it more difficult to understand information about the pandemic and resulting precautions. Now, the task of explaining that the world is returning to a ‘new normal’ may seem like another mountain to climb. If your child is at all like Ronell, it may take some time for them to understand and/or adjust to change – take your time with the process. It doesn’t have to happen all at once; instead, perhaps build up to a regular routine slowly. You could use tools like pictures, story-based teaching, or whatever else you have learned that connects best with your child (Autism Speaks, n.d.).
Some people with autism may think about things, including COVID-19 and social distancing and other requirements, in concrete terms. It may be helpful to support them in understanding that the rules have changed and likely will continue to change.
Supporting and Managing Information
If your child is a curious learner or an inquisitive worrier, chances are you are going to be fielding a lot of questions. These questions can range from ‘When will the swimming pool be open?’ to ‘Can you promise we won’t get sick if we go to public places?’. Being honest without overwhelming your child with too much difficult information or sharing increments of information may be helpful. It’s advisable for parents or other trusted adults to be transparent about the realities their child is facing. If you don’t know the answer to a question, we suggest being honest about not knowing. You could make a plan to find the answer. For instance, you could write out questions for the next time you visit your healthcare provider, or do some research on the topic. But be aware that not all information found on the internet will be helpful or reliable, so stick to sources you can trust.
Media Consumption
Many of us are saturated by COVID-19 news. Remember that the news is a medium created by adults, with the intention to be consumed by adults. Young people in general may have trouble deciphering media, and some with autism or intellectual disability may have additional barriers to understanding and managing the nature of the news, differentiating between past and present danger, and being able to put warnings of caution in perspective (New York University Child Study Center, 2006). Images of busy hospitals and empty streets from the height of the pandemic may frighten your child and cause them to believe that it’s still not safe to attend school or enjoy a favorite activity.
Since regionality is such an important factor in how quickly and in what manner services will be opening, seek information that is specific to your situation and region. While the federal government may provide broad, national information about the COVID-19 response, it is likely that more relevant news to your day-to-day life will be coming from provincial/territorial and/or other more local sources. Helpful information for people living in a large city, for instance, may look very different than what is conveyed in a rural community.
There are lots of bad news projections out there, with many things that can worry you and your child. As you attend to your child’s feelings and knowledge about COVID-19 or what it will be like to re-access the community, correct misconceptions. What information would help your child feel safer or find their ‘moorings’ in the midst of the changing circumstances? One mother has been listing ‘good news’ with her son each day as they’ve monitored, in written form, the total number of people worldwide who have recovered from COVID-19. This positive ‘snippet’ of news has offered a daily concrete reminder to her son that recovery is happening. If children or youth are overwhelmed, perseverating or escalating in worries, meaningful distraction also may be helpful. Ask yourself these questions:
- What activities or approaches have helped soothe your child when upset in the past?
- Could any of these soothing activities or approaches that were helpful before be helpful now?
Try to be proactive in anticipating what your child will need in better understanding and managing what they are experiencing. You likely know your child best, hence may have a sense of how they manage when faced with uncertainty and anxiety. It seems particularly important in this time of change to be alert for distress, anxiety, agitation and/or sadness in your child. If needed, contact a mental health resource in your community. Ways to find mental health services include the following, and there may be other organizations in your community that could be of help:
- Kids Help Phone: A 24/7 national service that provides resources in both French and English, including counselling, referrals and information. You can call 1-800-668-6868 to connect with a counsellor, or visit https://kidshelpphone.ca/ for more information.
- Canadian Mental Health Association: Provides a variety of mental health services, with locations across the country. Potential services include crisis and navigation services. Contact details and locations can be found through https://cmha.ca/find-your-cmha.
- 211 Canada: Run by the United Way, 211 provides information on health and social services in regions across the country. Dial 2-1-1 or visit www.211.ca for more information.
Giving Back
One possible way of productively moving into ‘regular’ life again is giving children and youth the opportunity to actively give back to the community, and thanking those who have worked extra hard during the pandemic. Some examples could be writing thank-you notes to people they know whose work has been essential, or helping to raise money for a non-profit organization that will help others in need. The National Traumatic Child Stress Network (n.d.) recommends these types of positive, encouraging tasks as a benefit to overall coping and recovery after a disaster. Take time with your child while working on a charitable project to talk through what they are feeling, and how they hope the people who receive their help will feel.
Tip: Doctors, nurses, and other health and social service providers have been recognized in this time when we’ve needed their expertise, which is indeed deserved! But don’t forget to also include on your list other people who also have been working hard. With your child, think about these people and the good work they have done.
Modeling Self Care
Your child will listen to what you say, but also may take cues from how you respond to situations. Following healthy routines is great, but don’t forget to also take care of your own emotional and mental health. If you have a network of other caregivers/parents of children who share similarities, reaching out and comparing ideas and support could be a source of information and encouragement. If you are not connected with any such group, you could contact your local or provincial/territorial autism or intellectual disability advocacy organization and ask how to get connected with supports. There is much to be learned and shared even if doing so with a Facebook group or video chat.
Moving Forward
The COVID-19 pandemic has brought difficult and shifting realities. Easing restrictions may offer relief in some ways, yet may also cause new stresses. Finding and holding onto hope seems so important! Families require access to up-to-date information as well as resources and strategies for moving forward, and there are credible sources of information regarding COVID-19. For more information, the following sources may be helpful:
- Government of Canada website on COVID-19: https://www.canada.ca/en/public-health/services/diseases/coronavirus-disease-covid-19.html
- The World Health Organization website on COVID-19: https://www.who.int/emergencies/diseases/novel-coronavirus-2019
- Centers for Disease Control and Prevention: https://www.cdc.gov/coronavirus/2019-ncov/prepare/children.html
References
Autism Speaks. (n.d.). Helping a child with autism deal with disaster. https://www.autismspeaks.org/helping-child-autism-deal-disaster
New York University Child Study Center. (2006). Caring for kids after trauma, disaster and death: A guide for parents and professionals. https://www.preventionweb.net/files/1899_VL206101.pdf
The National Child Traumatic Stress Network. (n.d.) Parent guidelines for helping children after a hurricane. https://cbitsprogram.org/_static/cbits/uploads/files//parents_guidelines_talk_children_hurricanes.pdf
Valenti, M., Ciprietti, T., Egidio, C., Gabrielli, D., Masedu, M., Tomassini, F., & Sorge, A. (2012). Adaptive response of children and adolescents with autism to the 2009 earthquake in L’Aquila, Italy. Journal of Autism and Developmental Disorders, 42(6), 954-960.
