Supporting Individuals with Autism through Uncertain Times

Support Understanding

Individuals with autism may have varied levels of understanding about the COVID-19 virus, how it spreads, and how to reduce risk of exposure. Here are several strategies to use to provide additional meaning to this complex scenario.

• Describe the virus and current situation (e.g. closures, social distancing) in concrete language and terms and avoid flowery or abstract phrasing. The understanding of abstract phrases and metaphors such as “she is under the weather”, “she caught the virus”, and “he is scared stiff about this” can be difficult for individuals with autism and can create confusion (Lipsky, 2013). Using direct and clear language is recommended. Though stark-sounding, phrases like “The coronavirus is a type of germ. These germs are very tiny, and when they get inside your body, they can make you sick” (https://www.pbs.org/newshour/health/10-tips-for-talking-about-covid-19-w…), may be easier for individuals with autism to understand.
• Use a social narrative, a story that clarifies a situation and possible responses through modified text, photos, or the use of technology (Wong et al., 2014). Individuals on the autism spectrum benefit from receiving information in multiple formats, as they often have receptive language deficits (Mody et al., 2013). Several example social narratives have been developed to give individuals more information about COVID-19, help them understand how to reduce risk, provide insight into how they may be feeling, and offer assurance that those feelings are normal. Reading the narratives to/with the individual with autism regularly across several days is helpful. Revisit and adjust as needed and circumstances shift.
• Provide visual supports to offer guidance on coronavirus specific actions and behaviors. The “rules” around how we greet people (e.g. no more handshakes), how we interact with people, even family members (e.g. social distancing), and how often/when we wash our hands (e.g. every time we come inside) are changing. Using visual cues to break down the steps of these new expectations may be helpful, as individuals with autism may respond best to a more explicit and concrete explanation. Several examples are provided.
• Offering visual cues to clarify the passage of time may be helpful. Individuals with autism may have trouble perceiving the passage of time, an invisible concept, and the use of a monthly, weekly, and/or daily calendar may assist in tracking time out of school/in a quarantine situation. While we do not know an “end” date to today’s uncertainty, marking the passage of time as well as including favorite activities, such as shows, online meetups, or game night on the calendar can be a helpful coping strategy.

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Support Understanding Strategy Packet

The Support Understanding Strategy Packet contains all of the content and resources related to supporting understanding for individuals with ASD.

 Support Understanding Strategy Packet.pdf

Support Understanding Resources

 Support Understanding-Calendar Template.pdf

 Support Understanding-Calendar Template.docx

 Support Understanding-Coronavirus.pdf

 Support Understanding-Countdown Example.pdf

 Support Understanding-COVID-19.pdf

 Support Understanding-Creating VS and SN Apps.pdf

 Support Understanding-Giving People Space When Talking.pdf

 Support Understanding-Giving People Space.pdf

 Support Understanding-Greeting People.pdf

 Support Understanding-Handwashing (Clipart).pdf

 Support Understanding-Handwashing (Photos).pdf

 Support Understanding-Handwashing.pdf

 Support Understanding-Timer Apps.pdf

 Support Understanding-Timer using Stickie Notes.pdf

Offer Opportunities for Expression

Children and young adults will likely have difficulty articulately expressing how they feel about the many unexpected changes. Fear, frustration, and worry may be expressed through challenging behavior like tantrums, refusing to participate in family activities, or withdrawal. For individuals with autism, these communication difficulties may be coupled with expressive communication delays, limited verbal or nonverbal skills, difficulty perspective taking, and/or social communication deficits.

• Consider providing multiple opportunities for family members to express their feelings as they are able—through family and individual discussions, writing activities, movie making, or play. Feelings and needs may be communicated through alternate forms of expression such as the use of augmentative and alternative communication (e.g. iPad, pictures), listening or playing music, dance, yoga, and various visual art forms. In addition, recognize that an increase in challenging behaviors may be an expression of anxiety or fear, and consider if support strategies in place are adequate (see strategy 3 for further discussion of coping and calming strategies). Several examples are provided that can support expressive communication.

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Offer Opportunities for Expression Strategy Packet

The Offer Opportunities for Expression Strategy Packet contains all of the content and resources related offering opportunities for individuals with ASD to express themselves.

 Offer Opportunities for Expression Strategy Packet.pdf

Offer Opportunities for Expression Resources

 Offer Opportunities for Expression-Activities.pdf

 Offer Opportunities for Expression-Communication Tools.pdf

Prioritize Coping and Calming Skills

Supporting individuals with autism to learn coping, self-management, and self-care skills is a priority during this time of uncertainty.

• Ideally, individuals with autism have some coping and calming strategies in their repertoire of skills to access with support during their most anxious times. These may include rocking in a rocking chair, listening to music on headphones, deep breathing, watching a preferred video clip, brief periods of vigorous exercise, or accessing a favorite activity or material. If coping or calming strategies are not yet part of the routine, caregivers can prioritize the teaching of these skills during this time of uncertainty.
  • Strategically choose times of the day when the individual with autism is calm to initiate the instruction.
  • Create a concrete and visual routine to support the use of these strategies. Many free apps are available for calming strategies and guided meditations such as Calm, Headspace, Breathe2Relax, Pacifica, and RainRain. Several examples of calming routines and self-management systems are provided.
  • Ensure that the individual with autism has ample access to these calming activities.
  • Coping/calming activities may be scheduled regularly across the day in the initial weeks of changes, then, if appropriate, caregivers may introduce and teach a self-management plan that helps individuals track their anxious or worried responses and identify when the calming strategies are required.
• Exercise/physical activity is a proven strategy to reduce anxiety symptoms with the broader population, as well as with individuals with autism. Consider establishing/adding basic exercise routines for the family such as wearing a FitBit and counting daily steps, a nightly walk, or an online/app based workout. Many sites are offering free access during this time, such as the Down Dog yoga app, Nike Run Club, and Facebook Live streams from Planet Fitness.

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Prioritize Coping and Calming Skills Strategy Packet

The Prioritize Coping and Calming Skills Strategy Packet contains all of the content and resources related to self-management skills for individuals with ASD.

 Prioritize Coping and Calming Skills Strategy Packet.pdf

Prioritize Coping and Calming Skills Resources

 Prioritize Coping and Calming Skills-Calming Routine.pdf

 Prioritize Coping and Calming Skills-Exercise Activities.pdf

 Prioritize Coping and Calming Skills-Exercise Choice Board.pdf

 Prioritize Coping and Calming Skills-FACE COVID.pdf

 Prioritize Coping and Calming Skills-Mindfulness Apps.pdf

 Prioritize Coping and Calming Skills-Self-Management.pdf

Maintain Routines

While it is important to create time and space for all family members to process uncertainty, individuals with autism may cope best when daily routines are only minimally interrupted. Routines can provide increased comfort for individuals with autism (Faherty, 2008) and may allow them to better express their feelings related to the changes. For example, instead of skipping a Friday night movie tradition because of increased screen time at other times during the week, choose a movie that can facilitate a conversation about the changes, loss, and/or associated feelings (e.g. Inside Out, Finding Dory). Combining the stress of the COVID-19 related changes with the addition of changed routines–especially if the new activities are nebulous or unstructured–could potentially exasperate or extend the adjustment process (Lipsky, 2013). Important routines to maintain include:

• Sleep/wake routines: Maintaining physical health is key for all family members and ensuring proper sleep is an important contributor. Sleep disturbances are more common in individuals with autism, thus extra attention may be required to support good sleep hygiene and maintain bedtime and waking routines (see more https://www.autismspeaks.org/sleep).
• Household chores/daily living skills: Participating in structured household chores and routines is a recommended strategy to support children and young adults coping with stress related to COVID-19 (https://www.nctsn.org/sites/default/files/resources/fact-sheet/outbreak_factsheet_1.pdf). Individuals with autism may need additional supports, such as a task analysis, to be able to participate in and/or complete these activities. Several examples are provided for common chores along with a template that can be used for a variety of daily living activities.
• Expanding the use of a visual schedule, and using one more regularly throughout the day, may help facilitate participation in activities at home and reduce anxiety. Many caregivers use elements of a visual schedule already (e.g. a calendar on the refrigerator, a list of errand locations, a photo of which therapist is coming to visit) and these can be extended for use across the day. The format and length of the schedule may vary based on the individual’s needs, and several examples are included.

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Maintain Routines Strategy Packet

The Maintain Routines Strategy Packet contains all of the content and resources related to maintaining individuals with ASD’s routines.

 Maintain Routines Strategy Packet.pdf

Maintain Routines Resources

 Maintain Routines-Make a Snack.pdf

 Maintain Routines-Task Analysis Template.docx

 Maintain Routines-Task Analysis Template.pdf

 Maintain Routines-Tips for Creating TA.pdf

 Maintain Routines-Unload the Dishwasher.pdf

Build New Routines

It may also be necessary to create new routines during this time, as there are many new demands of caregivers—possibly homeschooling for the first time, continuing to work in/out of the home, and/or caring for multiple children or other family members. Several new routines that may be helpful are described here:

• Transitioning off screens: For many reasons, children and young adults may access screens more frequently and for longer periods of the day during this time. Transitioning away from a device, especially after a period of extended use, may be difficult for many children and young adults; however, the behavioral rigidity and inflexibility often characteristic in individuals with autism may make these transitions problematic. Establishing a clear, consistent, and concrete routine for this transition can better prepare the individual for the coming transition and offer support throughout.
  • Use a visual timer. It may be helpful for individuals with autism to “see” how much time remains of screen time before they will be expected to transition to off the device. Concepts related to time are fairly abstract (e.g. “You have a few minutes”), often cannot be interpreted literally (e.g. “Just a second” or “We need to get off in a minute”), and may be confusing, especially if time-telling is not a mastered skill. Presenting information related to time visually can assist in making the concepts more meaningful. One example is the Time Timer ™ app (https://www.timetimer.com/collections/applications), which displays a section of red that disappears when the time runs out.
  • Another visual transition strategy to use is a visual countdown system. Like the visual timer, a visual countdown allows an individual to “see” how much time is remaining in an activity. The countdown differs, however, because there is no specific time increment used. This tool is beneficial if the timing of the transition needs to be flexible (e.g. caregiver would like the child to stay engaged on the device during a work call but doesn’t know when it will end). A countdown system can be made with numbered or colored squares or sticky notes, or any shape or style that is meaningful to the individual. As the transition nears, the caregiver can pull off or cross off the top item (e.g. the number 5) so the individual is able to see that only 4 items remain. The caregiver decides how quickly or slowly to remove the remaining items depending on when the transition will occur. Two minutes may elapse between the removal of number 3 and number 2, while a longer amount of time may elapse before the final number is removed. Once the final item is removed, the individual is taught that it is time to transition. Several examples are provided, and these can be used to support any transition.
• Offer choices. In a time of crisis, when most people feel like so much is out of their control, providing choices can increase a sense of autonomy and motivation. Creating regular opportunities across the day where family members have a voice about what happens and when it happens can serve as an effective anxiety reducing strategy and a communication tool. These choices might include the route for the nightly walk, meal options, order of activities for the day, and/or preferences for activities. Several examples are provided for use across the day and age range.
• Creating a work space with a to-do list. For the first time, many children and young adults will be expected to complete schoolwork in the home setting. Individuals with autism may have difficulty generalizing the strategies and skills they used in the school environment to the home environment (e.g. organizing materials, attending to work activities, submitting assignments online). Thus, it will be helpful to establish a designated workspace to help clarify expectations and reduce distractions. This may be a spot at the dining room table designated by a colored placemat and facing away from the television or window. If multiple children are working in one space, consider adding a small visual divider (e.g. an open folder) between them. Caregivers can create a visual “to-do” list in several different ways—
  • a) placing the individual worksheets to be completed on the child’s left and a small basket on the child’s right to put them in when they are finished, or
  • b) writing a short list on a sticky note of the tasks to accomplish during the work session (e.g. 1 science story and 15 minutes of ABC Mouse). These can be crossed off when they are finished. Older children and young adults can likely generate their own to-do lists but may need some initial support to establish a workspace and launch these routines.

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Build New Routines Strategy Packet

The Build New Routines Strategy Packet contains all of the content and resources related to building new routines for individuals with ASD.

 Build New Routines Strategy Packet.pdf

Build New Routines Resources

 Build New Routines-Additional Activity Resources.pdf

 Build New Routines-Daily Schedule Example Using Stickie Notes.pdf

 Build New Routines-Daily Schedule Example.pdf

 Build New Routines-Daily Schedule Template (Using Stickie Notes).docx

 Build New Routines-Daily Schedule Template Using Stickie Notes.pdf

 Build New Routines-Daily Schedule Template.docx

 Build New Routines-Daily Schedule Template.pdf

 Build New Routines-Educational and Movement Resources for Teenagers.pdf

 Build New Routines-Educational Resources for Kids.pdf

 Build New Routines-How to Transition Off Screens.pdf

 Build New Routines-Inside and Outside Activities.pdf

 Build New Routines-Movement Resources for Kids.pdf

 Build New Routines-Weekly Choices and Goals.pdf

 Build New Routines-Weekly Schedule Template.docx

 Build New Routines-Weekly Schedule Template.pdf

Foster Connections (From a Distance)

Individuals with autism are more susceptible to social isolation and loneliness, and this may be exacerbated by quarantine conditions. Positive social support is important for everyone during this period, and individuals with autism may need more explicit facilitation to ensure that social connections continue. Caregivers may need to check in to ensure social contact is continuing via text or direct messaging, and/or build in opportunities for daily social contact with family, friends, neighbors, teachers, or others via FaceTime, What’s App, Google Hangout, Marco Polo, or other apps. Scheduling time to connect with others via online platforms to attend religious services, play chess, participate in socially engaged gaming, complete online schoolwork, or virtually volunteer are ways to safely promote social interaction and stave off isolation. Several examples provide support around using apps that can foster connectedness.

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Foster Connections Strategy Packet

The Foster Connections Strategy Packet contains all of the content and resources related to fostering connections for individuals with ASD from a distance.

 Foster Connections (From a Distance) Strategy Packet.pdf

Foster Connections Resources

 Foster Connection-Calling with FaceTime.pdf

 Foster Connections-Marco Polo.pdf

 Foster Connections-Video Chat Apps.pdf

Be Aware of Changing Behaviors

Individuals with autism may not be able to verbally express their fear, frustration, and anxiety about the many changes and/or their health, so these expressions may be demonstrated through other means. Caregivers should be aware of the behavior of individuals with autism during these uncertain times and be alert for signs of anxiety and depression. These may include a change in sleeping or eating patterns, increases in repetitive behaviors, excessive worry or rumination, increased agitation or irritability, or decreases in self-care (Hedges, White, & Smith, 2014, 2015). If these behavior changes are observed, additional support from mental health and/or medical providers such as a family doctor, therapist, psychologist, or psychiatrist may be warranted. The individual may require more support or different types of support (e.g., regular therapy, regular exercise, medication). Most mental health providers and non-urgent care medical providers are offering services via telehealth, and emergency legislation has expanded insurance coverage (including Medicaid) for these options.

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Be Aware of Changing Behaviors Strategy Packet

The Be Aware of Changing Behaviors Strategy Packet contains all of the content and resources related to tuning into the mental health of individuals with ASD.

 Be Aware of Changing Behaviors Strategy Packet.pdf

Be Aware of Changing Behaviors Resource

 Be Aware of Changing Behaviors-Crisis Supports.pdf

Summary and References

Plotting a course through the COVID-19 pandemic is a trying experience for all. Caregivers supporting individuals with autism during this time face extra challenges. These 7 strategies and the associated resources and examples will allow individuals with autism to better understand COVID-19, cope with the many changes associated with COVID-19, and practice communication, social, and adaptive skills that may reduce some of the trials during this very uncertain time.

As a caregiver, it is easy to be focused on how this time of uncertainty is impacting the child(ren) in the home, especially those with additional needs, but this pandemic has considerable impact on all family members. We encourage caregivers to prioritize their own self-care in whatever form that takes – meditation, connecting with other parents who understand the situation, watching a favorite show, enjoying a snack alone, exercise, or taking an extra-long shower. Caregivers, alongside the individual with autism, are navigating unprecedented territory without a clear end point which requires ongoing acts of self-kindness and self-preservation.

To learn more about autism, the strategies in this article, and other evidence based practices please visit our free, interactive online modules, AFIRM: https://afirm.fpg.unc.edu/modules/

Acknowledgements

The research reported here was supported by the Institute of Education Sciences, U.S. Department of Education through Grant R324B160038 awarded to University of North Carolina at Chapel Hill. The opinions expressed represent those of the authors and do not represent the U.S. Department of Education.

Suggested Citation

Hume, K., Waters, V., Sam, A., Steinbrenner, J., Perkins, Y., Dees, B., Tomaszewski, B., Rentschler, L., Szendrey, S., McIntyre, N., White, M., Nowell, S., & Odom, S. (2020). Supporting individuals with autism through uncertain times. Chapel Hill, NC: School of Education and Frank Porter Graham Child Development Institute, University of North Carolina at Chapel Hill. Retrieved from: https://afirm.fpg.unc.edu/timely-toolkits/supporting-individuals-with-autism-through-uncertain-times/

References

Faherty, C. (2008). Understanding death and illness and what they teach about life: A practical guidebook for people with autism or Asperger’s, and their loved ones. Future Horizons: Arlington, TX.

Hedges, S., White, T., & Smith, L. (2014, May). Depression in adolescents with ASD (Autism at-a-Glance Brief). Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, CSESA Development Team.

Hedges, S., White, T., & Smith, L. (2015, February). Anxiety in adolescents with ASD (Autism at-a-Glance Brief). Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, CSESA Development Team.

Hume, K., Regan, T., Megronigle, L., & Rhinehalt, C. (2016). Supporting students with autism spectrum disorder through grief and loss. Teaching Exceptional Children, 48(3), 128-136.

Lipsky, D. (2013). How people with autism grieve, and how to help: An insider handbook. Jessica Kingsley Publishers. London, England.

Mody, M., Manoach, D. S., Guenther, F. H., Kenet, T., Bruno, K. A., McDougle, C. J., & Stigler, K. A. (2013). Speech and language in autism spectrum disorder: a view through the lens of behavior and brain imaging. Neuropsychiatry, 3(2), 223-232.

National Child Traumatic Child Stress Network. (2020). Parent/caregiver guide to helping families cope with the Coronavirus disease 2019 (COVID-19) At https://www.nctsn.org/sites/default/files/resources/fact-sheet/outbreak_…

Ten Tips for Talking about COVID with your Kids: https://www.pbs.org/newshour/health/10-tips-for-talking-about-covid-19-w…

Wong, C., Odom, S. L., Hume, K. Cox, A. W., Fettig, A., Kucharczyk, S., … Schultz, T. R. (2014). Evidence-based practices for children, youth, and young adults with autism spectrum disorder. Chapel Hill: The University of North Carolina, Frank Porter Graham Child Development Institute, Autism Evidence-Based Practice Review Group.

Translations

We have partnered with a number of colleagues globally to translate and adapt resources. Please select the language below for a translated/adapted PDF version of packet. 

Resource	Translated by
Polish Translation	Centrum Terapii Autyzmu SOTIS
Swedish Translation	Psykolopartners
Chinese Translation	Nankai University
Italian Translation	CAT Territorial Autism Center
Japanese Translation	The Society for the Study of TEACCH
Arabic Translation	Hashemite University
Mandarin Translation/Adaptation	National Taiwan Normal University
Spanish Translation/Adaptation	UNC SLP Masters Students
Czech Translation	Czech Society for Inclusive Education

If you are interested in learning how your organization can translate or adapt the materials, please contact Dr. Kara Hume at kara.hume.unc.edu. 

Resources

Supporting Individuals with Autism through Uncertain Times

 Supporting Individuals with Autism through Uncertain Times Full Packet.pdf

 Supporting Individuals with Autism through Uncertain Times Article Only.pdf

Support Understanding

 Support Understanding Strategy Packet.pdf

 Support Understanding-Calendar Template.docx

 Support Understanding-Calendar Template.pdf

 Support Understanding-Coronavirus.pdf

 Support Understanding-COVID-19.pdf

 Support Understanding-Creating VS and SN Apps.pdf

 Support Understanding-Giving People Space When Talking.pdf

 Support Understanding-Giving People Space.pdf

 Support Understanding-Greeting People.pdf

 Support Understanding-Handwashing (Clipart).pdf

 Support Understanding-Handwashing (Photos).pdf

 Support Understanding-Handwashing.pdf

 Support Understanding-Timer Apps.pdf

 Support Understanding-Timer using Stickie Notes.pdf

Offer Opportunities for Expression

 Offer Opportunities for Expression Strategy Packet.pdf

 Offer Opportunities for Expression-Activities.pdf

 Offer Opportunities for Expression-Communication Tools.pdf

Prioritize Coping and Calming Skills

 Prioritize Coping and Calming Skills Strategy Packet.pdf

 Prioritize Coping and Calming Skills-Calming Routine.pdf

 Prioritize Coping and Calming Skills-Exercise Activities.pdf

 Prioritize Coping and Calming Skills-Exercise Choice Board.pdf

 Prioritize Coping and Calming Skills-FACE COVID.pdf

 Prioritize Coping and Calming Skills-Mindfulness Apps.pdf

 Prioritize Coping and Calming Skills-Self-Management.pdf

Maintain Routines

 Maintain Routines Strategy Packet.pdf

 Maintain Routines-Make a Snack.pdf

 Maintain Routines-Task Analysis Template.docx

 Maintain Routines-Task Analysis Template.pdf

 Maintain Routines-Tips for Creating TA.pdf

 Maintain Routines-Unload the Dishwasher.pdf

Build New Routines

 Build New Routines Strategy Packet.pdf

 Build New Routines-Additional Activity Resources.pdf

 Build New Routines-Daily Schedule Example Using Stickie Notes.pdf

 Build New Routines-Daily Schedule Example.pdf

 Build New Routines-Daily Schedule Template Using Stickie Notes.docx

 Build New Routines-Daily Schedule Template Using Stickie Notes.pdf

 Build New Routines-Daily Schedule Template.docx

 Build New Routines-Daily Schedule Template.pdf

 Build New Routines-Educational and Movement Resources for Teenagers.pdf

 Build New Routines-Educational Resources for Kids.pdf

 Build New Routines-How to Transition Off Screens.pdf

 Build New Routines-Inside and Outside Activities.pdf

 Build New Routines-Movement Resources for Kids.pdf

 Build New Routines-Weekly Choices and Goals.pdf

 Build New Routines-Weekly Schedule Template.docx

 Build New Routines-Weekly Schedule Template.pdf

Foster Connections (From a Distance)

 Foster Connections (From a Distance) Strategy Packet.pdf

 Foster Connections-Calling with FaceTime.pdf

 Foster Connections-Marco Polo.pdf

 Foster Connections-Video Chat Apps.pdf

Be Aware of Changing Behaviors

 Be Aware of Changing Behaviors Strategy Packet.pdf

 Be Aware of Changing Behaviors-Crisis Supports.pdf

Resources for Adults with ASD

 Supporting Adults with Autism through Uncertain Times Full Packet.pdf

Translations and Adaptations

 Arabic-دعم الأشخاص من ذوي التوحد خلال الأوقات الطارئة.pdf

 Chinese- 新型冠状病毒肺炎期间孤独症患者康复指南-Translation by Nankai University.pdf

 Czech-Materiály a článek Podpora lidí s PAS v nejistých dobách by COSIV.pdf

 Mandarin=支持自閉症者度過新冠肺炎下的不穩定時期 by National Taiwan Normal University.pdf

 Japanese-不確実な時に自閉症の人たちを支援するということ-Translation by The Society of the study of TEACCH.pdf

 Italian-Il supporte alle persone con autism nei periodi di incertezza-Translation by CAT Territorial Autism Center.pdf

 Polish – Autyzm w niepewnych czasach – Translation by SOTIS.pdf

 Spanish-Apoyando los individuos con el autismo en tiempos inciertos-UNC SLP Masters.pdf

 Swedish – Att stödja personer med autism genom oroliga tider-Translation by Psykologpartners.pdf