Get into their world and get into a new routine with them!

As someone who has cared for children, teens, and adults on the autism spectrum for about 30 years, I can’t imagine what you child and you are going through (especially with no school routine and the services they receive); but, with every crisis there can be a silver lining. Here is an opportunity to enter into their world, and that can be harder than with “typical” kids. Ask yourself, have you ever played video games with your child – Minecraft, etc.? Once you do, you might find they will listen to you better and you will have more fun than you expected! This demands that you yourself be on a routine that parallels theirs and perhaps each day review the routine. Kids on the spectrum especially demand routine. Perhaps write up a schedule that can be followed daily and, if both parents are home, switch off. Review the daily routine with your spouse and if you can your child. It sounds crazy but maybe this is the time to get a pet, if you can continue to care for it long term, or make face masks for other people (if that is possible developmentally). Go for a walk every day. Play or listen to music and move and dance – make a video together and show your child. Remember: Most kids on the spectrum are visual learners.

And now for some lessons from Temple Grandin!

1. Set a schedule
“Routine, schedules and figuring out what helps you cope. First, you need to make a new routine. You convey to your children that they are going to get up and get ready for school, just like we always have, even though we are doing it at home. After breakfast and getting dressed, go and do schoolwork and homework. Have lunch and then after lunch get some exercise by going for a walk, as long as you practice social distancing. I advise working on the schoolwork in the morning when the child is fresh. Then tell them, ‘we are going to have lunch together, and then we can do a board game or a puzzle. We will take a walk or do some other exercise.’ And then he or she can have one hour of downtime on a device where the child gets to pick what he wants to watch. Just one hour a day. I don’t like binge-watching, so I recommend maybe one or two episodes of a favorite show a day. I also feel like us living together in such close proximity is like living in the space station in which everyone requires their alone time to read a book or work on their laptops—we all need a bit of this as well.”

2. Show no fear
“One of the first things is for parents not to show fear. It is also important to put [the health crisis] in perspective using language that the child will understand. We can compare it to a storm that you have to hunker down for; except this is a longer storm. Explain that we will have a schedule, we will do our work, schoolwork or homework, play some games and watch movies as a family, and when we do things together it will help keep us safe.”

3. Fun over fear
“Board games are great. And with all the TV shows and movies there are to watch, take turns choosing them for movie night. So, if there are two adults and a child in the home, the child gets to pick the movie every third night. And each of you has to sit through all of the movies. Watching the movie and playing games are more than entertainment. It helps with turn-taking and gets your mind off the fear. It goes back to the Jaak Panksepp emotional systems. You have fear, anger, separation distress, nurturing, hugging, sex and play. You also have ‘seek’ (the urge to explore where you engage your mind). So, when I’m looking up and reading studies online about medications for COVID-19, I’m doing ‘seek’ and that turns off the fear. So, when you and your child are making cookies, figuring out how to make cookies turns on the seek emotion and turns off the fear emotions. All animals and people have them. I mention them in my book Animals Make Us Human, and it is in my talk that I did on zoo animals.”

4. Get involved in their video therapy
“I’m really worried about young children ages 2 and 3 who can’t get speech therapy and other vital services. That’s really bad because the younger you can work with these kids, the better the outcome. So, if a 3-year-old goes 6 months without therapy, that could be detrimental. And there isn’t a really good answer to what to do about it because you can’t do that work online, it requires one-to-one interaction. You could have a therapist assess your child and give you advice about some work to help them do online, but the fact is those children need a lot of hours of one-to-one therapy. One recent option that I’ve seen was a therapist doing a videoconference in which the parents are coaching the child and the therapist was helping the parents.”

5. Limit the news to one hour per day for teens and adults with autism
“That’s plenty of news, and let’s not watch it in the morning. Many of us have work to do and the children have schoolwork to do.”

6. Put it in perspective
“I think we can explain that we will get through this as individuals, families, communities and a nation. And there are things we need to do to be careful, like staying home, keeping our homes clean, engaging in social distancing and other safety measures, including washing our hands and using hand sanitizer.” “[For kids worried about canceled plans, school activities or future vacations], you explain that Disneyland is closed right now. Movie theaters are closed right now. I went by a movie theater the other day and the little glass cases where they put the posters were empty. You explain that our stuff got canceled, too. Our work and my speaking engagements were canceled. You’ve got people who can’t pay their bills. The people I feel the sorriest for are the ones who are financially strapped. We have storms and floods that are dangerous and we have to take precautions and we have to do this right now. But it will get solved.”

7. Stay social and stimulating—no slouching!
“I would suggest getting your child online with some friends from school on Zoom or calling them on the phone. It’s something specific, something they can look forward to and it doesn’t cost money. Let’s keep to our schedule and take the child who is getting bored and find some grown-up literature on history, politics, science, or anything else that piques their interest. And absolutely no slouching around in our pajamas.”

Must see videos of Temple Grandin

What it feels like to be autistic. 
Temple Grandin discusses her experience with autism, from not speaking to becoming a renowned author and professor.

TEDxDU Temple Grandin — Different kinds of minds
A tireless advocate for people who think differently, Grandin makes the case that we need the collaboration of all kinds of minds to solve problems, prevent disasters, and accomplish objectives. Diagnosed with autism and someone who “thinks in pictures”, Grandin sees the value in every individual’s ability to make a contribution.

Inspiring Speech About Learning Differently – Temple Grandin Movie (2010)

Be well!

Lester Hartman, MD MPH
“Proactive in your child’s care. Empowering families for over 60 years.”

Follow me on Twitter @DrHartmanWMPEDS