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As the coronavirus epidemic continues to drone on, Americans are embracing a new “normal” and leaving behind the daily routines that, until recently, crafted so much of daily life.
But for children with an autism spectrum disorder — which affects about 1 in 54 children in the U.S., according to federal estimates — adjusting to change is not always easy, as has been the case for 4-year-old Husdon Teodoro of East Quogue, New York.
“The pandemic completely shifted Hudson's daily routine. As a child on the spectrum, Hudson depends and thrives on a daily — and consistent — routine,” Kristen Teodoro, Hudson's mom and an Autism Speaks advocate, recently told Fox News. “That being said, it was extremely hard on all of us within the household to adjust to this major change for Hudson.”
“When it comes to my son, I understand that routine is vital. He has a hard time dealing with unexpected things, activities, people, etcetera. So when my son wakes up and knows what to expect, his day flows much better,” she continued.
Though Hudson has become better accustomed in weeks past, Teodoro, 30, noted that keeping up with the day-to-day while in quarantine has been “exhausting.”
“I think most parents with children on the spectrum understand the ‘extra work’ we are expected to put in throughout the day. Now that teaching has also been added to the list, the only word I can find is ‘exhausting,'" she said.
To start the day, Hudson watches his teacher’s prerecorded "circle time" and "story time" videos while eating breakfast. By 11:00 a.m., his younger brother, Tucker, goes down for a nap — which is when Hudson begins his “Zoom therapies” that conclude around 3:00 p.m.
“All of which are still trying and struggling to get him to cooperate,” added Teodoro of the therapies. “But we are getting there with baby steps.”
Time outdoors is next, which is followed by dinner, bath time, and finally, bedtime. The same routine picks up the next day.
“Slow and steady wins the race. Do not put so much pressure on yourself. We are not trained therapists, we are not educators, we are their parents. We are trying our best,” Teodoro said, when asked what advice she would give to other parents who have children with an autism spectrum disorder and may be facing similar challenges during these uncertain times.
“A little at a time and then add more to that time as you go. If you get two minutes of learning activities in, that's great. If you get 10 minutes the next day, that’s great, too. Try your best every day, but also understand this is a huge adjustment for them and they need to familiarize themselves with it before they dive in,” she added.
To learn more about how children with autism, in particular, are affected by the coronavirus epidemic and the daily changes that have accompanied it, Fox News spoke to Dr. Donna Murray, the vice president of clinical programs and head of the Autism Treatment Network (ATN) at Autism Speaks. Murray is also an adjunct associate professor of clinical pediatrics at Cincinnati Children’s Hospital.
The following has been edited for length and clarity.
Fox News: Why are routines important for children with autism, and what can happen if those routines are disrupted?
Murray: A lot of autistic people find comfort in the familiar, which adds order to each day. The difficulty of understanding why a routine is disrupted and how long it’s going to last creates a lot of unknowns. Changes to daily schedules can lead to increased anxiety and problem behaviors. Parents should start by creating a new schedule for their child to follow a new weekly routine at home. A printed schedule with images can be a concrete way to keep expectations consistent from day to day for their child – Autism Speaks has a printable template on our COVID-19 resources page. The routine should build in extra time for physical activity to encourage both physical and mental well-being.
Fox News: What can parents do during this time to help their children and ensure they meet important developmental milestones?
Murray: Long term absence of school or work can mean a loss of previously acquired skills, particularly academic skills. In-home support from family members or telelearning options may help maintain some of those skills. However, this may be a good time to focus on daily living skills. Participating in household chores such as cooking, dishwashing, or self-care, may be a good way to focus on these skills. Parents can demonstrate and teach more independent living skills and offer abundant praise and reinforcement for successes. We know parents are shouldering a lot of the work of teachers and specialists at home, so lean on your providers as much as you can. Reach out to your child’s teachers and service providers to develop a long-term plan for implementing techniques or working toward goals at home. They may be able to offer a web-based video training session.
Fox News: What other challenges are facing the autism community as the coronavirus epidemic continues?
Murray: Not only are families suffering from reduced income, closed schools, and closed day programs, but individualized educational and vocational supports sometimes cannot be delivered remotely or are more limited in hours per week or scope. Many appointments have shifted to telehealth, which is a great alternative but may not be the right fit for every child. There is also an overall lack of connection with the community.
Autistic adults are also facing unique challenges during this time. From appointments being canceled, to work being closed, to classes being moved online, there are many different factors that are creating disruption. In addition to changes in routine, adults may be experiencing unemployment and changes in independent living situations. For example, while getting groceries may have been a routine task before, that process looks different for everyone now. Some stores are directing traffic one-way through the aisles or requiring other new procedures, in addition to dealing with product shortages and purchase limits. These changes can quickly pile up and make it extremely difficult for someone with autism to navigate them and get what they need.
Fox News: Can the public do anything to help?
Murray: Be kind. Now more than ever the autism community needs kindness and compassion. At Autism Speaks, we are focused on creating a kinder, more inclusive world for people with autism and we encourage the community to be kind and reach out to someone who may be experiencing additional challenges during these trying times. You never know what challenges a particular person is facing, so offering support and understanding can be a universal starting place to help each other right now.