April marks Autism Awareness Month, which recognizes autism spectrum disorder, a neurological disorder which affects the way the brain develops and processes information. We reached out to professor Michael Alessandri, executive director of the University of Miami-Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD), to share tips and resources to help parents of children with autism during this stay-at-home period. He responded to our following questions.
Where do you start? As a parent, how do you know what you need?
Start with the health and well-being of the family. We encourage parents to be aware of safety guidelines from the CDC and any community-specific guidelines for how to go about family life. Once they have that basic information, immediately establish a new routine, because routines are so important to children with autism, and this new normal will require a new daily routine.
Remember to breathe and take one day at a time. No one is getting this perfectly right, and parents shouldn't put pressure on themselves to execute any plan perfectly either. Many parents will have their own jobs to do. And, now they have to add teaching and caring for their children in their own homes 24 hours per day—without in-person professional help.
How can parents help their children adapt?
The most important thing for families of children with autism is to establish that new routine quickly. I also think it is very important for children to maintain their education and therapy programs as we know very well that children with autism lose their skills without ongoing rehearsal of them. The emotional connection with teachers, therapists, paraprofessionals, and classmates is also critical. Tools like FaceTime, Zoom, and other video conferencing/calling platforms should be used to allow children to see the important people in their lives on a daily or weekly basis to keep those connections strong and stable.
What should families know or do while adjusting?
The most important thing is to know that none of us has been through anything like this before, so we all should try our best to be patient and forgiving. Everyone is compromised right now. I doubt anyone is performing any task optimally, and that includes parenting! This is not the time for perfection. This is the time for "good enough" parenting.
Homeschooling is difficult, but it is what we’re all doing. It will require a major effort by all and lots of creativity to keep these children engaged in a meaningful way for at least some of every day. Parents and teachers should confer regularly to determine how to best meet the learning goals of the children in this new learning environment.
They should consider some of the benefits of this moment in time, in terms of their child's learning. The home environment offers an opportunity to teach academic concepts in a naturalistic environment that might actually make learning more meaningful to children with autism, such as learning math concepts while following a recipe to cook a meal with a parent.
How have virtual support groups and other resources made an impact on those participating?
Despite the challenges, our team at CARD quickly deployed all of its services remotely. We wanted to roll out an array of services—some existing and some brand new—to support our clients, families, and their providers. Remote technologies have enhanced our connections with our families. We have launched numerous online support groups for mothers, fathers, adults with autism, and teens, and the response has been overwhelmingly positive. Our families and our colleagues are grateful to have these platforms through which they can share their experiences while feeling connected and validated, and that gives them some strength.
What have you and the team at CARD learned so far since moving to remote services?
Thankfully, the move has been somewhat seamless. We are actually able to provide even more services and reach more people, so in some ways it has been a positive transition. We know, however, that the connection to CARD and the services we are providing families are not all that they need. As many families struggle, we are doing our part to remind them that we are here, that we care, and that more service offerings will be created to meet their growing needs through these next weeks and months.
What kind of support is available for families, whether you’re part of CARD or not?
On the UM-NSU CARD linktree, families can find resources, materials, and activities for home-based learning in both English and Spanish, for children as well as teens/adults. Access visual supports—which can be pictures or other visual items to communicate with a child who has difficulty understanding or using language—and home schedules. Download a social narrative on COVID-19, available in English and Spanish with an accompanying whiteboard video for each. Additionally, the Autism Society of America shared COVID-19 resources.
One of seven, state-funded, university-based outreach and support centers in Florida, UM-NSU CARD is dedicated to optimizing the potential of people with autism spectrum disorders, dual sensory impairment, sensory impairments with other disabling conditions, and related disabilities. Since launching in 1993, CARD currently serves nearly 13,000 families in Monroe, Miami-Dade, and Broward counties.