The Pandemic and Neurodiverse Students
by Coleen Vanderbeek, Psy.D, LPC., Lucille Carr-Kaffashan, Ph.D.
The COVID-19 pandemic has altered the lives of students across the United States and around the world. Shifts back and forth from wide scale school closures, remote and hybrid learning models, and full week in-person school schedules have created disruptions in children’s educational, social, physical, and emotional development.
Students of all ages and their families were affected by these changes and the accompanying uncertainty. Some students, however, were disproportionally affected, including students with pre-existing mental health conditions, students of color, students from impoverished living conditions, students with disabilities, and students who are neurodiverse.
Neurodiversity (ND) refers to non-pathological variations in the human brain regarding social functioning, learning, attention, mood, and other mental capacities. Students with ADHD, dyslexia, Autism Spectrum Disorder (ASD), and those who have Tourette’s or other tic disorders are just a few considered to be neurodiverse.
Neurologically diverse students, especially those with autism spectrum disorders (ASD), tend to struggle in many different areas of their lives. Many ND students have difficulties with communication, social interactions, and restricted interests. In addition, ND students often have a high need for order and stability, engage in repetitive behaviors, exhibit sensitivity to sensory input, and take part in sensation-seeking behaviors. The experience of being ND frequently involves bullying and social isolation. These students typically have less input than others due to social and communication deficits. They also suffer from increased anxiety, depression, and have lower confidence and self-esteem related to the difficulties associated with navigating the world around them.
The Impact of Pandemic Related Transitions
Surveys and research studies conducted over the course of the pandemic have consistently demonstrated increased levels of stress and mental health symptoms across all segments of child and adult populations. Even under typical circumstances, ND learners are more sensitive to changes in their environments. Unsurprisingly, therefore, while overall negative experiences reported were high across all research participants, parents of children with autism reported more overall negative consequences to changes imposed by the pandemic.
Certain behaviors that are often observed in ND students, specifically those with ASD (“meltdowns”, sensory issues, stimming behaviors) were reported to increase during the pandemic, and may represent both reactions to, and efforts to cope with, the anxiety produced by the various disruptions and changes. As discussed by Genova, et al., parents of autistic children were more likely to report that their child was negatively affected by routine changes, whereas parents of non-autistic children were more likely to report that their child was affected by social isolation. Students with high anxiety and/or social aversion have also exhibited an exacerbation of school avoidance behaviors.
A study conducted in Turkey described a PTSD-like clinical presentation amongst individuals with ASD in terms of increased stereotypical behaviors, aggression, hypersensitivity, behavioral problems, and sleep/appetite alterations. In addition, for many individuals with ASD, the additional distress and trauma caused by the pandemic worsened their mental health symptoms. Overall, 70–80% of people with ASD are diagnosed with anxiety, while 20–30% suffer with depressive disorders.
Another significant stressor for neurodiverse students has been changes in or the elimination altogether of special services such as speech therapy, occupational therapy, physical therapy, psychotherapy, DIR-Floortime, and Applied Behavioral Analysis (ABA). While many districts and families were able to coordinate some sort of virtual means to continue these services, providers and families alike have acknowledged that in many cases academic, behavioral, and emotional goals were not always met in virtual settings.
In summary, neurodiverse students have been particularly vulnerable to pandemic-imposed changes in routine, to the loss of human connection with supportive teachers, therapists, and classmates, and to an environment that has been laden with anxiety and uncertainty. Most parents of neurodiverse students reported that remote learning was a struggle for their families and that children required significant parental support to stay on task. It was harder to establish and stay in a routine with home-based instruction, and while video formats allowed teachers and students to communicate without masks, emotional connection was still difficult. For some children, specific academic and therapy needs while learning at home were different from their needs while at school, so the accommodations that worked for them in school did not necessarily apply in the same way at home.
Unexpected Upsides to Home-Based Learning for Some Students
Parents, educators, and researchers also noticed that the virtual classroom provided unexpected benefits for some neurodiverse students. The ability to work in a familiar setting, with more control over sensory input (e.g., lighting, room temperature, and less distractions from other students), helped some students avoid sensory overload and social anxiety. Working from home eliminated the need for adherence to mask and physical distancing requirements in the classroom, which in and of themselves were poorly understood and stressful for many students. Video conferencing allowed students and teachers to see each other’s faces, enhancing both verbal communication and access to facial expressions and emotional states.
Working at home allowed parents to be more flexible in responding to their child’s varying needs. In addition, some parents reported that overseeing their child’s school day enhanced their understanding of his/her learning style and challenges.
Some children with severe social difficulties were much more relaxed while working at home and could concentrate more fully on academics and therapeutic interventions. Similarly, some ND students reported a less negative impact from social isolation than other students reported.
Where Do Districts Go from Here?
Research on the negative impact of pandemic-related school disruptions on children in general has raised concerns about significant learning and other developmental losses that may manifest later in life in lower academic attainment, lower rates of employment, lower earnings, and higher crime rates. Neurodiverse students who may have participated less in virtual schooling and who are more vulnerable to the effects of disrupted routines may be at even greater risk of these negative outcomes. As districts step back to reconfigure and enhance mental health, SEL, and other student supports, they might want to pay particular attention to mitigating the potential long-term effects of this pandemic for neurodiverse students.
Effective School Solutions (ESS) has developed a 5-pronged approach to supporting neurodiverse students, and we encourage school personnel and caregivers to consider these categories of intervention:
Strategy 1: Enhancing Understanding and Communication
In times of increased stress, it is normal for humans to struggle with identifying and articulating feelings. Finding the right words to describe an internal affective state can be quite challenging. Students with a variety of individualized neurological profiles may have even greater difficulty with expression and language, may have a limited emotional vocabulary, may struggle with pragmatic communication, and/or may exhibit a variety of other communication related difficulties. These underlying communication issues create an added barrier to understanding the ever-shifting landscape, and to fully expressing feelings like confusion, fear, and uncertainty.
Individuals who are unable to express internal states through words often can express them via non-verbal means. Behavior is a form of communication, and is particularly important when a child is preverbal, has no language, or has neither the developmental level nor the psychological capacity to “tell us” what they are experiencing.
In the absence of adequate language-based communication skills, ND students may express their feelings with potentially disruptive and troubling behaviors, including meltdowns, tantrums, refusal to take part in activities, withdrawal, increased sensory sensitivity and/or avoidance, and increased perseverative behaviors. Caregivers and school personnel can help by:
- Increasing opportunities throughout the day for all family members/classmates to practice the verbal expression of feelings. Scheduled, semi-structured times at home and in the classroom can include a review of the day’s schedule and expectations, can help students practice the verbal expression of feelings, and can help students learn to articulate the types of support that they might need that day.
- Creating multiple opportunities for non-verbal self-expression. These might include writing activities, such as a family or classroom daily newsletter, or individual journaling or scrapbooking. Tapping into students’ technical interests and skills can also be useful — students can be encouraged to create movies or develop music play lists with songs that represent a full range of human emotions.
- Supplying materials that support therapeutic play and self-expression through the visual arts and movement (e.g., dance, yoga, exercise), contexts in which children may feel safe enough to explore difficult and unpleasant experiences.
Strategy 2: Developing and Supporting Coping Skills
When confronted with novel or ambiguous situations, individuals need to access and utilize healthy coping strategies. Most students will already have some, but the larger the repertoire the better since not all strategies are available and/or appropriate in every setting. Ideally, parents, clinicians, and school personnel will coordinate efforts so that a consistent set of coping mechanisms that are tailored for an individual child can be repeatedly practiced and reinforced across multiple settings.
Some examples of coping skills are:
- Rocking (in a chair or otherwise)
- Deep breathing
- Listening to music or soothing sounds (with or without headphones)
- Engaging in short periods of robust activity (jumping, spinning, running, etc.)
- Taking a bath or shower
- Watching a preferred movie/TV show/video clip
- Spending time with a favorite toy, or object
- Snuggling with a pet (real or stuffed)
- Deep pressure or massage, or the use of weighted blankets and/or “safe” spaces
- Sensory play (fidgets, etc.)
To maximize the effectiveness of developing/supporting coping skills, parents and school professionals should purposefully choose times of the day when the student is calm and relaxed to introduce and/or practice skills. Practice the skills frequently, when the student is not under stress, so that the skills become second nature and are more easily accessed during times of stress. It is also helpful to create a concrete, easy-to-understand visual schedule/routine to support the ongoing use of skills. This might include which skills are available/appropriate at various times of the day depending on the context.
Strategy 3: Maintaining and Creating Routines
Many individuals cope best when daily routines are only minimally interrupted or altered. Routines provide increased comfort and are even more important during times of stress. Routines are one of the best tools for tolerating anxiety and worry. Some examples of daily routines are:
- Sleep/wake times and routines
- Hygiene routines
- Household chore routines
- Mealtimes and related routines
- Entertainment and leisure routines
It may be necessary to create new routines to accommodate ever changing circumstances and needs. Some examples of potential new routines are:
- Screen time use and transitions (not including screen time used for remote education, telehealth, or socialization). Although transitioning from technological devices can be difficult for all students, ND students are particularly vulnerable to dysregulation during times of transition. To maximize the possibility of smooth transitions, establish clear boundaries and rules related to screen time and use. Define what screen time means to the student, the amount and schedule for screen time allotted each day, whether screen time is earned and if so, how is it earned, and what the expectation is for transitioning from screen time.
- Use verbal and visual “countdown” methods. Prior to starting screen time, and when nearing the end of screen time, remind the student of the next activity. The activity following screen time should never be an undesirable activity. Use a visual timer to emphasize a concrete limit, and offer ongoing verbal reminders of how much time the student has left, e.g., 10 minutes left, 5 minutes left, etc.
- Create and review each morning the daily schedule. Structuring the student’s day ahead of time is a highly effective way to help reduce anxiety associated with ambiguity. Include the student in the planning process as much as possible, e.g., “would you like to do math during morning academics or after lunch”, “do you want to watch YouTube videos before or after you do your chores for the day?”
- Create a workspace at home for the student that is as uncluttered and distraction-free as possible. Help the student create a “to-do” list that can be checked off when each item is completed.
Strategy 4: Promoting Socialization
Positive social support is important for everyone, but some individuals may be more sensitive to feelings of social isolation and loneliness. COVID-19 restrictions such as quarantine and social distancing have certainly exacerbated these feelings. ND individuals may need more concrete assistance to ensure the continuity of social connections as the world adjusts to a new balance of in-person and virtual activities. Caregivers and school professionals should be especially vigilant to monitor the safety of ND students’ online interactions given that many have difficulty reading social cues.
ESS suggests the following tools for promoting positive social connectedness:
- Schedule daily opportunities for social connectedness. Help students create a list of family members, peers, professionals, etc. with whom they can “meet” either in person or via video formats such as Skype, Zoom, or FaceTime. Telephone calls and texting are other possible avenues for connecting.
- If a given student and his/her caregivers cannot generate a list of individuals to connect with, school professionals might consider connecting students with similar social needs within the district, and/or formalizing regular contact with trusted adults at school, or at other community organizations (e.g., a church or other religious organization).
Strategy 5: Monitor Behavioral Change
As discussed above, neurodiverse students often have difficulty with the verbal expression of feelings, especially during high stress situations such as adjusting to a pandemic. Sometimes ND students express their emotions via behavioral changes or shifts, so it is in the best interest of any given student to promote a partnership amongst caregivers, school personnel, and treating providers to regularly share information about even the slightest of changes.
Some behavioral changes that may indicate the presence of anxiety or depression include:
- Changes in eating or sleep patterns; nightmares
- Excessive worry or ruminations
- Increased agitation or irritability
- Increased clinginess or withdrawal
- Skill regression
- Increases in typical ND behavior patterns such as meltdowns, tantrums, perseverative or stimming behavior
Neurodiverse students have been particularly vulnerable to pandemic-imposed changes in routine, to disruptions in human connection, and to life within an anxiety-ridden environment. While moments of crisis can present significant challenges for neurodiverse students and for those with mental health or other disabilities, they also provide the opportunity to reevaluate and reimagine our schools with an eye toward inclusion and accessibility for our most vulnerable learners.