As we slowly adjust to new phases of Covid19 quarantine, we’re also adjusting to yet another “new normal.” While these shifts are challenging for everyone, they are especially difficult for
children and young adults with ASD. The vast majority of children and young adults with ASD
depend on routine in daily life. Many neurotypical people prefer routines as well, but
consistency is even more important for individuals with ASD.
According to Total Spectrum Care, an Illinois based mental health service center for those with ASD, overstimulation particularly drives that strong desire for structure. Since people with ASD, especially children and young adults, tend to get overstimulated easily (by loud noises, busy social situations, or even unusual smells, for example), routine provides a respite. Individuals with ASD often engage in repetitive behaviors, so they often fall into routines naturally as well. It is certainly difficult to maintain your ASD child’s routines while the nation’s on the Covid19 rollercoaster, but many families have been grappling with an additional challenge: regression. It is certainly common for children and teens to regress during times of stress or significant change. Psychotherapist Sherry Ziegler recently told Parents Magazine that when children regress, they’re saying ‘I'm hurting’ or ‘I'm scared;’ ‘Help me;’ ‘Make me feel safe again.” Most of us had the experience of sneaking into our parents’ bed after a nightmare as a little kid. We craved stability and comfort, just as individuals with ASD coping with quarantine are doing now. However, there are other routines that quarantine has interrupted for families with children who have ASD. In March, the Department of Education released new data in accordance with the Individuals with Disabilities Education Act (IDEA), about students with ASD. The report found that the number of special needs students who have ASD has jumped from 4.97 percent to 10.51in the past decade. In analyzing data from a similar 2011 CDC report, Oregon based pediatrician Katharine Zuckerman found that 50 percent of children with severe ASD only relied on therapeutic services they received in school. The National Center for Education Statistics found that during the 2018-19 schoolyear 14% of all public school students had an ASD diagnosis. Since so many schools remain closed or continue to use distance learning, many students with ASD are missing key programs, and not just traditional educational ones.
Individuals with ASD very often need to practice activities of daily living, and other skills that
will help them live independently. Such skills, like getting dressed, making breakfast, or making a cup of tea, may seem almost laughably simple to neurotypical folk. But, many activities of daily living are of course very challenging for those with ASD, especially children or teens. As Feda Almaliti, Vice President of the National Council on Severe Autism, whose son has ASD, eloquent wrote in a recent Stat News article, “Although toothbrushing seems like a simple, intuitive process to most, there are actually more than 40 individual steps to get from start to finish. Many children with severe autism...must learn and master each step before they acquire the skill.” Programs like occupational and physical therapies, and like Applied Behavioral Analysis (ABA), or even practicing at home, can have a significant impact on helping individuals with ASD develop those essential skills for independent living Yet, in order for such therapies to be successful, individuals with ASD need to practice them consistently, which is why many ASD educational programs offer or recommend in-home therapy as well as therapy in school. Covid 19 related closures have made it challenging for these programs to continue in person, and sometimes telehealth sessions are often ineffective. Significant changes in routine or inconsistent therapeutic visits also make it difficult for ASD individuals to maintain their progress, so regression during these uncertain times is perfectly normal--and incredibly common. And as a parent or caregiver, regression isn’t your fault. Think of it this way: you are an avid
biker and break your leg. After surgery and a hospital stay, you get discharged and have to work hard in rehab to slowly regain your strength. The first time you get back on your bike post-op, it suddenly feels like you’re learning to ride a bike for the first time. Because of your injury, you’re out of practice, “getting rusty” as some sports coaches might say. All this feels frustratingly different, just like many individuals with or families of children with ASD, or even you, are feeling at this very moment. The good news is that, just like you can practice riding your bike and regain your skills, individuals with ASD can practice the skills they weren’t able to work on during this time. It may take some time, but your ASD child will regain their skills and rhythms of their routines, and once again improve.