The global coronavirus pandemic has upended everyone’s lives. Socially, emotionally, financially – and often in ways we don’t expect. For the autism community, the changes wrought by COVID-19 are acute.
Life during coronavirus is anything but routine – and routine is something that families living with autism count on to create a safe and secure environment. Routine helps create order from chaos, relieves stress, and improves learning. So the disruption of routine results in added challenges.
Luckily, MedicAlert is able to call on some experts to provide practical advice and resources to help those with autism and their families cope during this difficult time. During a recent MedicAlert LIVE Healthy Hour, we were joined by Claire Lazaro and Tara Sisemore-Hester of Valley Mountain Regional Center(VMRC).
VMRC is one of the 21 Regional Centers in California that provide services to people with developmental disabilities including autism spectrum disorder, epilepsy, and cerebral palsy. As a nonprofit, they serve 16,000 consumers in 5 counties. Many of their consumers are people and families living with autism.
Clare and Tara lead the Clinical Services team at VMRC and both have extensive experience in working with children and adults with autism. Tara has worked in the field of developmental services for over 30 years, and serves on several state committees that help develop best practices for treatment and education. Claire is a Nurse Practitioner, as well as a Medical Doctor in her native Philippines. She also has two kids with autism – ages 11 and 12 – which gives her a uniquely personal point of view on the current situation.
Here are some highlights of the discussion (lightly edited for print), and links to resources that Claire and Tara shared during the event.
Q. How much information about the pandemic should parents share with their children with autism, and how should they share it?
The important thing about sharing COVID information in using language and tools that are relatable for the person with autism. There are a couple of great resources we would recommend. For younger kids, there’s a good printable download called COVIBOOK that is available in 25 languages. It’s illustrated in a cute cartoon style that’s really interactive. For older kids or adults, the California State Council on Developmental Disabilities has an excellent publication, COVID-19 Information By and For People with Disabilities, that explains COVID in very plain language and visuals.
The other important thing is to remember that you don’t have to explain everything or provide all the details. Stick to what the person needs to know so you don’t overwhelm them.
Q. How do you make it less scary for someone with autism if they have to go to the doctor or ER during this time?
For some people with autism, going to the doctor is scary in the best of times. For example, with my daughter, I had to take her to the doctor’s office multiple times before she felt comfortable. At first we just went and spent a few minutes in the lobby. Then the next time we stayed in the lobby a little longer. We had to work our way up to the exam room. But it worked, and now she’s not afraid and doesn’t mind doctor’s visits.
What’s hard to deal with now is that to reduce the chance of infection, visitors are being limited in doctor and hospital settings. With a child or adult that has any kind of disability, this is a real problem, especially if they are non-verbal or have a hard time verbalizing their needs.
There are a couple of things I would recommend. The Florida Center for Inclusive Communities has created a great document called My Health Passport. It’s a PDF you can download and fill out and take with you to a doctor or hospital. It has space for medical information, but also includes sections on how the person best communicates, and any special needs they have.
This is also where a MedicAlert ID can be really helpful. Since MedicAlert stores the person’s full health profile, in an emergency situation it can really help make sure the person gets the care they need.
Something everyone should know is that people with autism or developmental disabilities have rights, even during this crisis. The Department of Health and Human Services has issued guidance that people with disabilities cannot be discriminated against in treatment allocation decisions.
Other organizations are advocating for accommodations to the visitor policy for people with disabilities, to allow a family member or caregiver to be with them if they do need to be hospitalized. The American Academy of Developmental Medicine and Dentistry’s Hospitalized Patients & Designated Support Staff Policy Statement is something you can use to make your case with a hospital.
The California Department of Public Health goes even a step farther, stating that “The presence of a support person is essential to patients with physical, intellectual, and/or developmental disabilities and patients with cognitive impairments. CDPH recommends that one support person be allowed to be present with the patient when medically necessary.”
Q. Please share some ways to create structure and improve the at-home learning environment. It’s even harder because I’m working from home too. What works?
This is a tough one! I’m working from home with my two kids with autism, so I get how challenging this is. One thing that’s really helped us is having a visual schedule. We made a whiteboard for each of the kids that plans out their day. What time they get up, when they eat, when they study, and when they play. We did it together, so they had some ownership and agency. In this time when everything feels like it’s out of control, letting the kids have input on how they spend their day gives them a little of that control back. Actually I made a visual schedule for myself too, because when you work from home it’s easy to lose track of time.
One thing to be sure to do is schedule breaks – for both you and your kids. Adapting to a new routine is stressful for everyone and they need some time to blow off steam. So put in time for them to get some exercise and do things they enjoy doing.
As for home learning tools, CAPTAIN (California Autism Professional Training & Information Network) has a great collection: Resources to Support School Closures/Distance Learning For Students With Autism. It’s also available in Spanish.
Q. How can we manage the stress level in quarantine for someone with autism?
Like I said before, all the change and disruption is definitely stressful. This is where The Zones of Regulation can be really useful. It’s a framework designed to foster self-regulation and emotional control. It’s also a very visual way to gauge mood and stress level. There are four zones: blue, green, yellow and red. Your goal is to stay in the green zone, but learn how to recognize when you or someone else is moving into the other zones so you can act on it. There’s a whole curriculum around this that’s very helpful.
A good publication for this is from the LA County Department of Mental Health called Coping with Stress During Infectious Disease Outbreaks. It’s available in 13 languages.
Q. Where can I go for some general information about autism?
A good place to start is the UC Davis MIND Institute. Their Autism Spectrum Disorder Resource Center has a lot of great content and links to other reputable resources.
Q. Any other resources you’d recommend for this unique time?
Yes. The Autism Research Institute has a good webinar series. Some useful topics are Talking to Kids About Changing Schedules, Altered Plans, and Disruption and Coping with Family and Virtual Interactions During COVID-19. Actually they have a whole section of resources for individuals and families on Coping With the COVID-19 Pandemic that has webinars, social stories and video aids.
There’s also a short video I like about how to Teach the Waiting Skill. This is so important, especially now.
MedicAlert thanks Claire and Tara for so generously sharing their time and expertise with our members. For more resources for managing through the COVID-19 crisis, visit MedicAlert’s Coronavirus Resource Center. There you’ll find information from trusted sources on what COVID-19 means for those living with specific medical conditions. There are also resources for staying sane and healthy during this unprecedented time.