Helping Students with Autism Adjust When School Re-Opens
by Coleen Vanderbeek, Psy. D., LPC, Director of Autism Services, Effective School Solutions
Students and teachers across the United States are finishing up the 2019–20 academic year via remote instruction after a demanding and anxiety-provoking four months under quarantine. The combination of fear, cabin-fever, social isolation, and “Zoom Fatigue” has left all members of the school community more vulnerable. As states move to contain the further spread of COVID-19 and to re-open schools and businesses, experts in multiple fields are fearing not only a second wave of infection, but also an epidemic of mental health symptoms, including anxiety, depression and post-traumatic stress (PTSD).
The COVID-19 pandemic has given rise to a collective, mass trauma. People with reasonably good coping skills and who have the ability to self-regulate, are struggling, so perhaps it goes without saying that individuals who were already more vulnerable, including people with autism spectrum disorder (ASD), are particularly impacted by this crisis.
National statistics show that 1 in 59 individuals are affected by ASD, and in New Jersey the ratio is a staggering 1 in 32. Children with ASD are at increased risk for both encountering traumatic events and developing traumatic sequelae, and although the topic is understudied, it is commonly believed that 100% of individuals with ASD will experience at least 1 traumatic event prior to age 18. The very experience of navigating the world with the social and communication deficits that are common to autism are for many, a trauma in and of itself.
Educators are painfully aware that there has been a significant increase in mental health symptoms in the general student population in recent years. One in five students ages 13 to 18 has or will have a serious mental illness. About 11 percent have a mood disorder, and 10 percent have a behavior disorder. At the same time, the prevalence of autism spectrum disorder is increasing, and in many cases, mental health and autism challenges overlap. Experts estimate that 75–80% of individuals with autism are dually diagnosed with a mental health or psychiatric disorder. The most common psychiatric diagnoses are depression, anxiety and PTSD.
Psychology professor and best-selling author Dr. Jean Twenge conducted a survey in April to assess the impact of the pandemic on U.S. adults, and found what she labeled a “devastating effect on mental health”. The 2020 survey revealed that 70% of participants met criteria for moderate to serious mental distress, compared with 22% in a similar survey conducted in 2018. Younger adults, ages 18–44, and parents with children under 18 at home, have been particularly hard hit. And, it is not much of a leap to assume that parents of special needs children are struggling the most, attempting to manage Individualized Educational Programs (IEP) at home, while either working from home, potentially worrying about the loss of employment, and managing their own stressors.
So, what can school professionals expect when students with ASD return in the fall, either in-person, or with some blended version of remote and in-person learning? Preliminary data suggest that these students have been regressing during the pandemic despite the best efforts of districts to provide some version of IEP mandated services, and parents struggling to facilitate their children’s remote learning. The full impact of disruptions in speech and occupational therapy, skill development programs, and other services are not yet known, and will depend on each student’s age, developmental stage, academic skill, the severity of ASD symptoms, family environment, and a myriad of other contributing variables. Mental health symptoms have increased in ASD-affected children, along with perseverative and self-soothing behaviors, and the quality of social relationships has declined.
Many students with ASD already feel socially isolated and ostracized, and when school resumes, might feel even more anxious and detached because of the quarantine. Stable, supportive relationships with teachers and members of their care team have been disrupted, and may take a while to re-establish. Because of the need for social distancing, special and enriching relationships with grandparents and other family members have been affected, potentially causing students to feel unsafe and insecure. While some students with ASD back away from physical contact due to sensory and/or social issues, others favor hugging and physical connection, and may struggle to respect boundaries and maintain social distance. Sensory issues might also affect students’ comfort with wearing masks, with hand washing, or with the use of hand sanitizer.
Students on the spectrum need consistency and predictability, and almost all home, school, and recreational routines have been turned upside down over the last few months. Due to difficulty adjusting to change, students with autism will likely need more time to acclimate to a more typical school schedule. This will become even more complicated if a district needs to combine in-school and remote learning in order to safely reopen, as a student’s schedule might vary from day to day.
A predominant emotion of parents and students alike upon the return to school will be ambivalence — a welcoming of a return to some version of normal, coupled with fear about venturing out into a newly unsafe world. After the trauma of Hurricane Katrina, child specialists observed that there was an increase in students’ externalizing behaviors. Many students with ASD already have challenges communicating their wants and needs, so an increase in behavioral expression can be expected. Since trauma causes difficulty with self-regulation, hyper-vigilance, and changes in cognitive ability and introspection (already a challenge for many students on the spectrum), teachers can expect more emotional outbursts, more fearfulness, increased engagement in restricted interests, increased perseveration, and increased problems with verbalizing emotions and needs. On the other hand, some students may respond with hypo-arousal, appearing passive and detached from learning and social interactions.
Other changes brought about by the COVID-19 crisis may also impact students. Many have been less physically active, have spent long hours on computers and other devices, and have had sleep and eating patterns changed, and these disruptions of routine can have significant negative effects. Parental stressors, such as unemployment and financial hardship, can also impact a child’s well-being and sense of safety. When school reopens, teachers may find that students with more stable and supportive family environments have greater difficulty separating from parents, while those in high-conflict families may have been subject to emotional and/or physical abuse because of the heightened tension associated with quarantine. Some parents will be mourning the deaths of friends and family members taken by the virus, and although the loss of a person does have some impact on students with ASD, the loss of routine, the loss of tangible objects, and even the loss of pet are shown to be a greater contributor to their sense of grief.
If all of this sounds very daunting, it is. But there are many things that school professionals can do for students with autism to ease them back into school. There are a few key areas to consider in planning for re-opening:
Remember that ASD is a spectrum disorder; there are many subtypes, and each student can have unique strengths and challenges. Be cautious about discounting the difficulties of students with milder forms of ASD as students with higher developmental capacities tend to be overlooked when it comes to supports. Since they do not complain, they do not get attention. The other contributing factor to the lack of support is the misconception that because a student has higher capacities, he should “know better”, or have the ability to problem solve on his own. Sadly, this is not true: if it were, these higher functioning individuals would not carry the ASD diagnosis.
Encourage parents to frequently document where their children are as far as behavioral and mental health symptoms over the summer in order to track regression and provide a baseline for the beginning of in-person instruction and intervention in the fall. Work with parents to identify rewards and incentives that can help motivate their children to re-engage in academic and therapy activities. And be sure to inquire about tangible losses such as family deaths or job loss so as fully to support students who are in mourning, or whose families are struggling financially.
If your district is proposing some form of blended instruction, with some students attending on some days and the rest on others, consider an exception for students with autism, e.g. daily attendance, or 3–4 school days in a row rather than alternating days.
Plan a school, classroom, and schedule “walk-through” right before school re-opens so that students can be prepared for the new flow of their days. Create visual supports — label lockers and cubbies, desks and chairs, the bathrooms and closets; create task checklists and visual daily schedule cards, etc. to help orient students. One of the universal losses during the COVID-19 crisis has been the loss of the sense of control over our lives. Where possible, offer students choices, e.g. which cubby they want, or what side of the classroom they want to sit on.
Prepare students for new procedures or practices that might trigger sensory issues, such as frequent hand washing, wearing masks, or needing to refrain from hugging. If a blended instructional model will be used, make sure to share your screens and include a lot of visual material during remote video instruction since individuals with ASD tend to be more visual than auditory with regards to learning. Consider sensitivity to volume and noise when adjusting computer sound settings. Complete an environmental check of the classroom and learning environments, go through each sense and modify the environment as needed based on the results (e.g., adjust the lighting, temperature, sound).
Maintain consistency as students with ASD struggle with unexpected changes and transitions. The #1 reason that students with ASD present in psychiatric crisis is a disruption of their routines. Take the time to be proactive and create a variety of options for routines and structure throughout the school day. Remember to include visual supports when possible.
Go back to the basics of working with ASD affected students. Find a common interest from which to build rapport/relationships. Create a list of each student’s personal preferences (e.g., video games, TV shows, music etc.) with the student/family, then do some research on the student’s interest and regularly spend time touching base on these interests.
Communicate frequently with members of each student’s support team, including community providers, psychotherapists, psychiatrists, primary care physicians, neurologists, OT, PT, ABA, speech therapy providers, and family caregivers. Such coordination is necessary in order for skills to generalize outside of the educational setting.
Consider the function of typical ASD behaviors, and examine your responses. For example, tantrums and repetitive behaviors may occur when students feel threatened and are unable to verbally express distress or soothe themselves. See yourself as an important part of the equation in each teacher-student relationship; your stress level and reactivity cannot be dismissed. It is most helpful if school professionals can adopt and maintain a trauma-informed stance toward students. Essentially, this means asking yourself “what is going on here? what happened to this child? what does this child need?” rather than “what is wrong with this child?” A trauma-informed stance will favor the conceptualization of “problem” behaviors as fight-flight, trauma-related survival mechanisms, rather than viewing them as oppositional or “bad” behaviors. Where possible, help the student focus on internal feelings and sensations when feeling threatened, coaching them on how to attach words to feelings, and ask them what would help them feel safe.
As in-person classes resume, don’t act like nothing happened, but don’t talk endlessly about the crisis either. Make room for students to express their experiences and distress, but redirect students to the educational tasks at hand, and toward hopeful planning and preparing for the future. Institutionalize classroom practices such as mindfulness, movement breaks, singing, or art tasks. The ESS Autism toolkit offers some suggestions about communicating more effectively with students with autism.
Check in often with parents and caregivers who may remain highly stressed, especially if the district implements a blended educational model that incorporates in-home remote instruction. As school re-opens, some may greet you with a greater sense of respect and cooperation, while others may be more irritable and demanding. Try not to take it personally. It is also critically important to remember that the COVID-19 crisis has disproportionately affected minorities and poorer communities, so don’t assume that all families have the level of support and resources needed to keep food on the table, much less to supervise in-home instruction and interventions.
In the aftermath of Hurricane Katrina, traumatized students looked to teachers to provide personal affirmation and hope. It is important to remember that even one strong, supportive relationship with a school professional can go a long way to help a student heal from trauma and grief. But remember: you are grieving many tangible and intangible losses as well. Both staff and students will need to “name and claim” this grief in order to move forward from losses of all kinds. Self-care is more important than ever, and ESS staff members are here to help with resources and referrals for both you and your students.
Twenge, J.M., Cooper, A.B., Joiner, T.E., Duffy, M.E., & Binau, S.G. (2019). Age, Period, and Cohort Trends in Mood Disorder Indicators and Suicide Related Outcomes in a Nationally Representative Dataset, 2005–2017. Journal of Abnormal Psychology, Vol. 128, №3, 185–199.