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COVID-19 and autism

Educators, students and families grapple with the new norm

April 17, 2020 by Kimberly Drake

For a significant number of families all over the world, autism spectrum disorder (ASD) is just another day at the office, with challenging behaviors the norm, and the struggle to obtain needed services a cold hard reality. 

Although the needs of autistic students are still not being met to full capacity across the nation, in our area, special needs programming was finally catching up with the opening of schools like the Lakeland STAR School/Academy. In only a year and a half, students attending STAR were making great strides, documented by test results and parent feedback, and were rolling along nicely through the 2019-20 school year. This school, along with other specialized educational programs in districts across the nation, were busily establishing routines for their autistic students and providing the therapies and education they needed to further their personal, emotional and educational growth.

And then COVID-19 threw a wrench in it.

Statewide shutdowns forced school doors to close, leaving Wisconsin students, families and teachers scrambling to reinvent education, diverting to virtual learning and online classes overnight. No school was prepared for this sudden closure, including STAR, and it has put parents, teachers and administration to the ultimate test. Even for students without autism, this shift to home-based learning has been a challenge. However, for the autistic population and their families, it has been an especially difficult transition.

How ASD characteristics make a pandemic like this more difficult

There is no doubt a worldwide epidemic of this magnitude is a challenge for everyone, as every citizen in every nation is affected. For those with autism, the characteristics of the disorder make the school closures and stay at home orders even more difficult. Because children and adults on the spectrum thrive on sameness and struggle with changes in routines, clothes, food, caregivers, and other parts of their environment, this current shutdown of schools has forced sudden and unexpected changes in day to day life, which in some, can lead to excessive anxiety and an increase in undesirable behaviors. 

Also, because those with ASD have difficulties with social interaction, as well as expressive and receptive language, communicating the reasons why they can’t go to school, and the reasons why they must engage in social distancing practices is yet another challenge. Fear surrounding the virus can also be tough to overcome, as children and adults with ASD tend to linger on the same subjects. If the coronavirus becomes their new topic, it can amplify COVID-related fears to a whole new level.

Another aspect teachers are concerned about is the potential regression that might occur the longer autistic students go without services. Students with ASD learn differently and need intensive, sometimes one on one instruction and support. As long as the stay at home orders are in place, the children and young adults who were making such fantastic progress will no longer have access to the same level of instruction and related services, and educators worry this may cause their students to lose precious ground.

Reports from the front lines from families all share the same thread. The change in routine and lack of one on one assistance is the main issue, and adapting to this pandemic has been a rough go across the board. The chaos surrounding the navigation of online classes and assignments coupled with schoolwork avoidant behavior is taking its toll on families, and teachers are reinventing how they teach on the fly to prevent students from losing ground while school doors are closed. Interestingly, it’s not just kids with autism who are struggling. Even neurotypical students from grade school to college level are dealing with a mountain of frustration, slowly adapting to this new norm.

STAR addresses the need

According to Lakeland STAR School/Academy (LSSA) director Eric Mikoleit, the entire team at LSSA is collaborating and creating a plan for academics and therapy, such as OT and speech, as well as addressing student’s basic needs for medication, counseling and meal distribution.

Mikoleit said when the school closure happened, STAR’s case-manager began to contact families to share information regarding the school’s resource page, inquire about any immediate needs, and assessed internet capabilities and the need for Chromebooks. 

“I directed teachers and our therapists to create a ‘Resource Document’ that we would post on our school website. This document contains information on remote learning, academics, sensory diets, and autism-related information, which consists of visuals and creating schedules while at home,” Mikoleit explained.

In addition, art-related Google classrooms were set up so students could continue with this critical therapy program, and PAES lab activities were adapted to a worksheet format. Therapists Dawn Pieper and Kris Webster contacted parents and began to create a plan to address therapy needs, as sensory diets are a huge concern during this closure. Also, following CDC guidelines, staff members deliver materials to students every Friday in the school van, placing the items in a bag and hanging it on the front doorknob.

“We have also created a weekly video chat via google classroom consisting of all students and staff, including STAR’s therapy dog Indigo, which has allowed students to connect with the entire student body,” Mikoleit added.

Adapting to the new norm, with or without ASD

Whether you have a family member with autism or not, adaptation is the key to getting through these uncertain times. Although these tips are geared towards those with ASD, they are helpful to anyone who suddenly finds themselves in a new role, as both parent and teacher, or transitioning from school-based student to online learner.

Reestablish routine — When school is in session, the daily schedule is set in stone, and for individuals on the spectrum, this is a critical piece to calm anxieties and keep undesirable behaviors at a minimum. Although the home school schedule doesn’t have to start at 8 a.m., it should follow a predictable pattern, including breaks for gross motor activities like playing outside. It would be helpful to know from your child’s teachers what classes occur at what times in the typical school day, as well as which days are set aside for specific schoolwork, so this schedule can be adopted in the home as best as possible.

Create a schoolwork-only zone — Much like a home office space, it’s helpful if the student has an area where they can do their work. This designated area gives them the visual cue they need to transition into schoolwork from other sometimes more preferred activities.

Use visual supports — Depending on how your child communicates, visual supports could include whiteboards with written instructions, images with the everyday schedule, and clocks or timers to indicate when work will begin and end. For children with autism, what is often used is the “First-Then” technique, which is using pictures or written words to show them what task must be accomplished first (schoolwork) before they can move on to a preferred activity (play).

Stick to school rule and reward systems — Often, there are classroom regulations that students follow, and it helps to continue these at home if possible. Also, reward systems they’ve become accustomed to, such as earning points towards a preferred activity for appropriate behavior, can help keep them motivated, and keep them “in the swing of things” for a smoother transition back into school when it reopens.

Use this time to work on independent living skills — Daily living skills are a must for all individuals, not just those with ASD. Skills like washing dishes, doing laundry and accomplishing yard work can be taught throughout the week or incorporated in the daily schedule. Learning financial skills, such as writing checks and keeping a ledger, is also critical for independent living, along with filling out job applications, writing letters, and proper emailing procedures. Many printable templates exist online that can help teach these everyday skills.

Ensure plenty of breaks for gross motor activity — For those with ASD, sensory needs can be overwhelming, therefore offering plenty of breaks to decompress and regulate themselves is crucial.

Communicate with teachers, set up video chats to remind the student they are a part of a school community — Although those with autism tend to have significant social and communication challenges, they desire a feeling of belonging just as much as neurotypical individuals. It is a myth that kids with ASD don’t need social interaction, and they often enjoy contact with their peers. As mentioned previously, some teachers, like those at STAR, have recognized this need and offer video chat sessions with entire classes, which can be very grounding for students who are currently isolated due to stay at home orders.

As events progress in the coming weeks, the only thing we can do as parents is to try our best to establish an environment that meets our children’s needs as best as possible. If you’re struggling at home with a child with autism, caring for an adult on the spectrum, or scrambling to find a sense of normalcy with your neurotypical children, keep in mind in a situation of this magnitude, with an uncertain timeline, there’s no way you as a parent or caregiver can do it all perfectly all of the time. Until the “wrench” is removed from the system, doing our best is more than adequate.

For helpful suggestions and contacts, consult the Wisconsin Board for People with Developmental Disabilities (WI BPDD) COVID-19 Resource Toolkit online at https://wi-bpdd.org/ or the Autism Focused Intervention Resources & Modules (AFIRM) online toolkit at https://afirm.fpg.unc. edu/supporting-individuals-autism-through-uncertain-times. To access the resource page at Lakeland STAR School/Academy, visit http://www.lakelandstar.org/.

Kimberly Drake can be reached at [email protected]

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