Coping with COVID-19: An annotated list of resources for families of individuals with ASD
“You can’t always control what goes on outside; but you can always control what goes on inside.”
– Wayne Dyer, EdD
The COVID-19 pandemic has led to significant disruption in services, changes to routines and structure, and an array of challenges associated with social distancing. Couple all of that with the reality that many parents are working from home, managing the home-schooling of other siblings in the family, and learning new technologies and platforms. Any of these can be a significant source of stress for parents of individuals with autism.
Fortunately, a number of organizations have created helpful resources and tools that we have compiled into an annotated list. Prior to highlighting these resources, we want to share a few suggestions and strategies. Many of these are echoed in the resources highlighted below.
1. Make time to talk to your child about the situation. Think of the discussion with them as a series of small conversations. Be truthful, avoid sugar-coating the situation, and be prepared to deal with their fears.
2. Check-in with them to ensure their understanding and revisit conversations and topics as needed. Focus on being supportive and offering the kind of comfort your child needs. For some children with autism this might mean being able to ask repetitive questions about the situation; for others it might be physical comfort or needing concrete plans and structure.
3. Remember how much of an important role model you are to your child and other members of your family. To paraphrase Mahatma Gandhi, “Be the change you want to see in your family.”
4. Catch your children being good. Reinforce cooperative behavior, flexibility, patience, kindness to others, healthy communication, and a sense of humor with behavior-specific praise (e.g., “I was so proud of you when you………”).
5. Allow yourself enough private time to process what you might be going through so you have the resources to be there for your family.
6. Monitor and limit what your children hear on television. News on the television or internet might be too vivid for them and lead to more confusion and fear. Don’t rely on the news to give them the information for which they may be looking.
7. As we move from a more immediate situation to a longer term one, develop a mindset in which each new week will reflect new strategies, new “work-arounds,” and lessons learned. We are all adjusting as we go.
What follows is a non-exhaustive list of coping for the general population:
* Crisis Management Institute offers a curriculum with new weekly content to help parents talk to kids about COVID-19. This week by week format will help make the adjustment period easier to manage and perhaps lead to lifestyle changes for your entire family. Topics include: Attitude affects outcome (Week 1); Managing anxiety (Week 2); Coping with an uncertain future (Week 3); Empowerment (Week 4); Filling time when kids are home (Week 5); and Distinguishing fact from hype (Week 6).
* Child Mind Institute’s resources for parents during the COVID-19 pandemic is an excellent addition to this list. They offer tips to handle children's anxiety that might arise from knowledge about the virus, to tantrums or meltdowns that occur due to schedule changes or transitions. Some of their materials are also available in Spanish.
You will also find a Symptom Checker which presents questions about various behaviors to see if they align with specific psychiatric and learning disorders. Although the Symptom Checker is not a substitute for a formal and thorough assessment by a professional, it may suggest possible diagnoses that can lead to a follow up conversation with your child’s pediatrician or other health care provider. Please note that changes in behavior that follow the stressful experiences associated with COVID-19 may not be indicative of a new disorder and actually reflect some adjustment challenges related to the pandemic and the disruption and changes associated with it.
* The CDC offers resources and concrete suggestions for parents to discuss emergency situations, such as the COVID-19 with their children. There are also specific tips for younger children, and an activity sheet that targets emotions experienced during an emergency. The activity may also be suitable for children with autism due to its visual nature. These materials are also available in Spanish. Additionally, the CDC provides a helpful list of possible reactions to expect from children of each age group. These are not specific to COVID-19 but address emergency situations in general. This article offers information that is COVID-19 specific and offers both general strategies and developmentally suitable talking points.
* The National Association of School Psychologists and National Association of School Nurses have created a booklet that offers specific tips for parents regarding how to have the COVID-19 talk with children. Specifically, they recommend monitoring TV viewing and access to social media.
* UNICEF offers specific DOs and DONTs while talking with children about the virus. For instance, they recommend using the words “acquiring or contracting the virus,” and avoiding saying “transmitting” or “spreading” as the latter assigns blame and indicates intentional transmission. They also offer 8 tips on supporting your child, and emphasize that parents first take care of themselves. Specific strategies for teachers are provided, for children of all ages ranging from preschool to secondary, and some of these can also be tried at home, and adapted to suit children with special needs.
* The National Child Traumatic Stress Network has put together a parent guide to handle the physical and emotional stress in the family during the COVID-19 outbreak, and provide suggestions for scheduling and planning family activities during the pandemic. A separate section emphasizes self-care and coping strategies, and ways to seek additional help.
* The Substance Abuse and Mental Health Services Administration created a comprehensive fact sheet that offers strategies for helping children manage stress during an infectious disease outbreak. It also provides tips geared toward varying age groups.
* ChildTrends provide information laid out much like our article here. A number of helpful suggestions are provided followed by a comprehensive set of links showcasing resources for both children and parents.
* Challenging times call for creative solutions. Since the pandemic will likely impact community travel for the near future, we wanted to include this short piece published in the Huffington Post about adapting birthday parties.
Resources specific for individuals with special needs:
* The International OCD foundation provides a comprehensive list of ideas for parents of youth with OCD, and handling questions that their children might have. This resource provides general suggestions and strategies specific to discussions with a child with OCD.
* Autism Speaks offers several helpful resources for parents, educators and health professionals working with children with ASD. Particularly useful are Dr. Peter Faustiono’s tips for the autism community, and a flu teaching story for children with several clear pictures. The story is also available in Hungarian and Korean at the moment. The printable handwashing routine with empty spaces to plug in pictures of the child at the end of the story is an excellent visual tool.
* A resource packet collated by the Autism Focused Intervention Resources and Modules provides support for individuals with autism during uncertain times. Their suggestions broadly fall under seven categories – support and understanding, offering opportunities for expression, coping and calming skills, maintaining routines, building new routines, fostering connections, and changing behaviors.
* Autism New Jersey has gathered a range of resources on their website titled “coronavirus hub”, where they offer information about telehealth, service delivery, employment and financial concerns, and tips for families, among others. The tips for families include a webinar on managing problem behavior at home, a coronavirus story for children, mindfulness and self-care activities, and ways to manage disrupted routines.
* SPAN Parent Advocacy Network have compiled a comprehensive list of resources for families during the COVID-19 crisis. They offer links related to education, health, activities for children and youth, self-care information and multilingual resources. The page is updated continuously with new links, and also lists national, state, and county level resources and information from the government.
Schools and service providers were not prepared for the impact of this pandemic and are learning how to navigate this new way of working with families and delivering services. Service providers and families are making collaborative efforts to find optimal and effective solutions and workarounds for disruptions to services brought on by the present scenario. We are all in this together and together we will figure out how best to meet the needs of our children.
Maithri Sivaraman is a BCBA with a Masters in Psychology from the University of Madras and holds a Graduate Certificate in ABA from the University of North Texas. She is currently a doctoral student in Psychology at Ghent University, Belgium. Prior to this position, Maithri owned and operated the Tendrils Centre for Autism providing behavior analytic services to children with autism and other developmental disabilities in Chennai, India. She is the recipient of a dissemination grant from the Behavior Analysis Certification Board's (BACB) Committee of Philanthropy to train caregivers in function-based assessments and intervention for problem behavior in India. She has presented papers at international conferences, published articles in peer-reviewed journals and has authored a column for the ‘Autism Network’, India’s quarterly autism journal. She is the International Dissemination Coordinator of the Association for Science in Autism Treatment (ASAT) and a member of the Distinguished Scholars Group of the Cambridge Center for Behavioral Studies.
David Celiberti, PhD, BCBA-D, is the Executive Director of ASAT and Past-President, a role he served from 2006 to 2012. He is the Editor of ASAT’s monthly publication, Science in Autism Treatment. He received his PhD in clinical psychology from Rutgers University in 1993 and his certification in behavior analysis in 2000. Dr. Celiberti has served on a number of advisory boards and special interest groups in the field of autism, applied behavior analysis (ABA), and early childhood education. He works in private practice and provides consultation to public and private schools and agencies in underserved areas. He has authored several articles in professional journals and presents frequently at regional, national, and international conferences. In prior positions, Dr. Celiberti taught courses related to ABA at both undergraduate and graduate levels, supervised individuals pursuing BCBA certifications, and conducted research in the areas of ABA, family intervention, and autism.