During the coronavirus crisis, many families who have children with autism spectrum disorder are facing the suspension of both school and essential services that their children are used to receiving. Additionally, children with autism may have difficulty adjusting to changes in their routine and environment. Although different states and districts are handling these situations in a variety of ways and every family’s needs are unique, there are some common starting points for parents to consider as we all adjust to this “new normal.”
Develop an emergency plan
Think safety first! Many parents may already have an emergency plan and a solid network of supports they have counted on to help them, but as news, health status and precautions change daily, it is important to re-evaluate one’s plan. Consider:
Supervision and caregivers: Who would your child stay with and where if a primary caregiver were hospitalized or otherwise physically ill/quarantined?
An emergency plan: Create an emergency plan placed in an obvious spot in the home. This should include updated contact information incase emergency personnel have to come into the home and need information quickly. The plan can have pictures with names of people with associated phone numbers and pertinent information on it. This information should also be shared with close contacts and those involved in the plan (such as providers, extended family members, trusted neighbors, etc.)
Regular check-ins: Identify and coordinate with a family or community member who checks in with the primary caregiver and/or child on a regular basis. Then, if a regular check-in is missed, that person has an emergency plan to follow.
Available resources:Know about available resources like the Autism Response Team, which is reachable by phone at 888-AUTISM2 (888-288-4762) or by email at email@example.com.
Develop a daily routine and schedule.
It is helpful for all children and individuals to establish a new routine with a defined schedule and structure. For children with ASD, change and new routines can be hard. Reward systems and behavior plans should be continued and even expanded to meet the needs of a full day. In order to establish a schedule that will be the easiest to transfer to staying at home try the following:
Have a start time and other cues that the day has begun. Continue routines such as hygiene, getting dressed and organizing materials needed for the day. This will maintain the practice of activities of daily living and provide cues for different parts of the day. As activities and days pass, provide an opportunity to check off or otherwise indicate completed activities and tasks.
Build off of older or existing routines. Contact teachers and providers and see what schedules they have. It is likely they already have a visual schedule in place; ask them to send you pictures of what they use to represent different subject or activity times. They may also have words or terms they use for certain times of day (for example maybe they have a special designated “Reading” time, which you might otherwise call “English.”)
Incorporate physical breaks, including fine/gross motor activities. Use an activity your child likes to incorporate physical breaks throughout the day. Schedule and plan these breaks.
Schedule in breaks for yourself. Taking care of a child 24/7 without the support of a community and school places even more responsibility on a parent. Try to schedule breaks during the day when your child’s schedule allows it; for instance, you might think of some activities they can do alone. Or, if possible, have another caregiver take over. During this time off, be intentional about what you might do.
Visual schedules. Schedules do not need to be fancy, laminated or have Velcro. Work with what you have in your home to create a schedule that has a visual component (like pictures or drawings). Tape and Post-its on a wall work also well. The most important thing is to develop a clear structure and routine that the child understands. Put the schedule in an easy-to-access place and guide your child through it each day. Be realistic and patient. It will take some time for you and your child to get used to it. Go through it several times each morning and throughout the day and preview the next day.
Remember the ABCs of behavior and behavior plans. Set up a clear system that has immediate, tangible rewards after the completion of a desired behavior. This can be done in small steps like First-Then (e.g., first reading for 10 minutes, then one minute of YouTube). Or they can be more complex, such as earning points throughout the day that add up to a certain menu of rewards at the end of the day like screen time, cuddle time or a recreational activity of their choice.
Here’s a sample of what a schedule can look like. You can add your own activities and pictures as needed.
7:30am – Wake Up: Breakfast, shower, get dressed, brush teeth
8:30am – School Start: Make school day schedule based on assignments in virtual classroom
10:30am – Movement Break: Dance break, yoga, short walk outside, stretching
12:00pm – Lunch: Make and eat lunch
1:30pm – School End/Reward Break: Can go on social media, talk with friends
3:00pm – Exercise: Walk outside, exercise video, go to the park, yoga
4:00pm – Free Time (No Screens): Reading, puzzles, games, rest, drawing, crafts, cooking
7:00pm – Dinner: Family dinner time
7:30pm – Free Time (Screens Allowed): TV, video games, reading, art, talking with friends
9:30pm – Get Ready For Bed: Nighttime routine
Consider the environmental arrangement
In addition to creating a schedule, try to foster an environment that works for you and your child.
Try to create different activity zones. Set aside parts of the living space for academic activities, eating, recreation and sleep. If you can, designate supplies and storage as well. A child can still be expected to keep their schoolwork in their backpack and put it in the front of the house each evening. If your child has strong tactile sensory interests, keep a few sensory toys that they can interact with in a specific area. This way, you can make sure that these toys are regularly sanitized, and you can teach your child what items they should and should not get sensory input from. Having physical reminders and prompts, as well as incorporating physical movement (having to get up and place different things in different places), increases activity.
Promote social communication and personal independence. Try to set up highly preferred activities in hard-to-reach places, in clear containers with labels that have words or pictures identifying what they are. This encourages children to intentionally communicate their wants. At the same time, if you want your child to continue practicing skills (for example, making their own lunch), increase easy access by leaving materials within easy reach or setting up clear labels and stations for them.
Practice new ideas during low-stakes moments. It will take time to adjust to all these changes. To start out, try during the weekend or at times when demands are low to practice implementing some of these ideas. Preview and discuss what these changes will be with your child before beginning. One change might be how much access a child has to their parent throughout the day. Consider times you are available and times you are not. Indicate these on a visual schedule and use visual cues. Using traffic lights or other visual signals can help your child learn when you will be responsive and when you won’t. Don’t expect these new systems to work right away. Practice them during low-stakes times (not right before your very important work call), and reward compliance immediately.
Set clear limits on when technology can be used. Screens may be a necessity as many resources are going to be accessed via phones, computers and tablets. Get to know helpful applications that limit access to non-academic material at certain times. (Here is a helpful link to sort through the applications and tools available.) Use visual cues and schedules for when technology can be used and for what purpose.
Continue working toward goals
It is especially hard that helpful therapies and interventions might be paused or otherwise discontinued. However, there are a lot of options to help continue making progress at home during this time. Just because in-school or community-based services might have stopped, it does not mean services and progress have to. Start with small steps:
Contact your service providers. Many providers are still offering services via telehealth through the use of video and phone conferencing. Reach out and see if they are. If they are not, ask if they know anyone who is. Have calls with the providers to walk you through the goals and see how you can adjust your home environment and daily routines to keep working on them.
Use your network. Contact other parents and advocacy groups to see how they are extending their services in the home. They may know of providers who are working via telehealth and can provide you with those resources, too.