Regression and What You Can Do About It

When an autistic individual gets fewer services than they need, or services are delivered at a lower intensity than is appropriate, their skills may plateau or decline. Those skills can be hard-won, and such regression can be heartbreaking.

Regression often takes place during breaks in routine and departures from normal, everyday life. The most striking example of this was the COVID-19 pandemic, but families may have a similar experience during school breaks, if a service provider suddenly becomes unavailable, or during other unpredictable events.

What is Regression?

Regression is the rapid or gradual loss of skills, and it manifests differently 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.)

	Physical safety 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 feelings
	Daily routines Difficulty eating, sleeping, and toileting
	Emotional regulation Loss of or decreases in coping and waiting skills
	Disruptions Difficulty starting or completing work/chores, skill deficits, performance problems
	Quality of life Other disruptions affecting quality of life, including inflexibility, rigidity, control issues

Document Regression

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 choose 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.

Moving Forward

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 and structure. 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.

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Recommended Reading

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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If you need assistance, call us at 800.4.AUTISM or information@autismnj.org or send us a message/chat with us via the link at the bottom of this page.

 

Originally posted:6/22/2023
Updated: 8/8/2023