REGRESSION DURING A PANDEMIC
This article is from the Autism New Jersey website. Autism New Jersey is the leading autism organization providing advocacy, referrals in and information in New Jersey. For more information about the services provided by Autism New Jersey please visit https://www.autismnj.org/
The COVID-19 pandemic has affected almost every aspect of daily life and especially so for children with autism as they experience a drastic decrease in educational, behavioral, and mental health services. Their parents are understandably concerned that this decrease in services has already or will result in a plateau or decline in their child’s hard-won progress and development. These losses are referred to as regression and are a reality or risk for every child with autism during times without access to services (e.g., winter break, summer vacation) and even more so for the extended length of time this pandemic persists.
What is Regression?
Regression is the rapid or gradual loss of skills. Regression is different for each person. Examples include loss of speech and social skills, the return of former or the presence of new challenging behaviors, increased stress, anxiety, and obsessive compulsive symptoms, and decreased motivation to learn and/or participate in daily activities.
Factors Contributing to Regression:
There are several contributing variables that may be impacting your child’s skills and disrupting your their normal behavior patterns including but not limited to:
Decreases in direct, intense, and consistent face-to-face support
Decreases in social interaction among friends and in the community
Changes in routines (e.g., eating, sleeping, physical activity, preferred activities)
Increases in unstructured time and screen time
Effectiveness of telehealth and remote learning
What should I Address First?
It’s important to keep a hierarchy of needs in mind when identifying what areas of regression to address first.
In almost all situations, health and safety are addressed first, followed by skills that are the most socially significant and directly impact their quality of life.
Consider the following order of priorities: (Individualize based on your child’s and family’s needs and priorities)
Any behavior that causes pain or injury such as physical aggression, self-harm, or that places your child or family members in an unsafe crisis situation (keeping in mind the close connection between communication and challenging behavior)Communications skills
Loss of or decreases in skills to express their needs, wants, and feelingsDaily routines
Difficulty eating, sleeping, and toiletingEmotional regulation
Loss of or decreases in coping and waiting skillsDisruptions
Difficulty starting or completing work/chores, skill deficits, performance problemsQuality of life
Other disruptions affecting quality of life, including inflexibility, rigidity, control issues
Record your concerns and where you have noticed regression in your child (e.g., what behaviors have recently been worsening, and/or what skills can they no longer do that they used to do).
Behavior can be observed, measured, and recorded. Try to be specific in your documentation. Consider the use of a behavior log template or parent interview form to record what behaviors/skills need attention.
Use your data collection to keep your concerns accurate and allow for individual attention for each area of regression.
To Prevent Further Regression of Skills
Talk with your child’s teachers and treatment professionals about what you have observed and documented. Problem solve together and identify new goals, strategies, and adjustments within daily routines.
Identify ways to incorporate motivation, repeated practice, and reinforcement to increase adaptive behaviors and maintain skills.
If your child is exhibiting challenging behavior, it’s important to understand why the behavior is occurring, i.e., what are they trying to communicate through this behavior. Understanding the communication driving the behavior (sometimes called the “function” of the behavior) is an important first step to helping them chose safer alternatives. An effective way to understand the function is a process called, Functional Behavior Assessment (FBA). An FBA requires expertise and collaboration among all who know the child well.
Addressing Regression with the IEP Team
As a parent, you have the right to bring up any concerns about your child’s regression with your school district’s Child Study Team. Prepare to discuss your concerns with the Child Study Team if your child’s regression is interfering with his or her learning, behavior, communication, and other life skills so they can establish goals, strategies, and updates to the IEP as needed. The Child Study Team can also determine the need for compensatory services to make up for any loss of skills your child has experienced.
Use the data you have collected documenting any regression to help support your concerns and the need for compensatory services.
You May be Concerned Returning to School will Cause Regression
Some parents have reported their child has done well with remote learning, and this experience has resulted in progression, not regression.
There are factors related to the success of the remote learning experience (fewer demands, the slower pace, more down time, fewer environmental stressors, more suitable for their personality) that may make remote learning more positive for some children.
As a parent, document the progress your child is making during remote learning. It is the school’s responsibility to support an educational environment from which your child can derive educational benefit, and if it’s the home/remote learning set up, then there might be a reason to continue with that for part of his/her education (e.g., a few days a week or when feasible for your child and family).
Even with the best programming and strategies in place, it will take time for your child (and your family) to get back to a place of routine, structure, and normalcy. Try to build off successes and look toward the future. Autism New Jersey is happy to connect with families who are facing these concerns to help you advocate for your child.
Bondy, A., & Frost, L. (2008). Autism 24/7: A Family Guide to Learning at Home and in the Community. Bethesda, MD: Woodbine House
Bondy, A., & Weiss, M.J. (2013). Teaching Social Skills to People with Autism. Bethesda, MD: Woodbine House.
Cohen, M. J., & Gerhardt, P.F. (2014). Visual supports for people with autism: A guide for parents and professionals (2nd edition). Bethesda, MD: Woodbine House
Glasberg, B. A. (2008). STOP that seemingly senseless behavior! FBA-based interventions for people with autism. Bethesda, MD: Woodbine House
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Autism New Jersey will continue to follow recommendations from the CDC and state Department of Health as the state begins to move through the stages of reopening.
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