A parent and a provider share their thoughts:
Katrina Davis is a family advocate at Seattle Children’s Autism Center and mother to Arthur, her 20-year-old beautifully complex young man with autism who gave his permission to share his story.
COVID-19 has my family cooped up and discombobulated. Life is especially upside down right now for my son. Arthur has severe autism and the simple but vital routines and predictability in his life are gone, leaving him agitated, confused, and edgy. On his most difficult days, the wind can set him off. He has communication challenges so we are not always able to understand what he needs or how he feels. Frustration for Arthur often leads to aggression, self-harm, or other dangerous behaviors.
The absence of important people in his life and the loss of a school schedule, favorite restaurants, and the beloved community pool, combined with the constant unknowns lead to long bouts of dysregulation and can place him in a behavioral crisis. We have no answers. We have no solutions. We live in constant fear he will hurt himself or others. The supports that were there before are gone.
As parents, we hear: Behavior is communication. Arthur is clearly telling us he is not happy and needs help.
Maintaining my son’s safety while trying not to activate the challenging behaviors is difficult and requires information and support beyond my knowledge and instinct as a parent.
Due to COVID, we parents are on our own, so finding helpful and credible sources of information and support is crucial. We turn to professionals, other parents, self-advocates, family, and friends to help our children find some peace and comfort in a world none of us can change right now.
Parents, let’s keep in touch with others who understand our struggles, share what works for our kids, be good to ourselves, and find comfort in knowing our loved ones with autism have faced many barriers and challenges in life and they have survived. Our children with autism are mighty.
Erin Bassett, M.Ed., BCBA, LBA with Seattle Children’s BioBehavioral Program shares insight and a link to a helpful article regarding challenging behaviors.
The COVID-19 pandemic and measures imposed to curtail its spread have created unprecedented challenges to the continuity of care for our patients at the autism center. As a practitioner working in the BioBehavioral Program (a program that offers specialized behavioral assessment and treatment services), I know this time has been especially difficult for families with children and young adults who engage in severe challenging behavior.
We know that individuals with autism and other intellectual and developmental disabilities may not understand the concept of a pandemic or quarantine, have a hard time handling changes to their daily routines, and lack the leisure skills to fill their time at home. Unfortunately, these frustrating circumstances only serve to increase the likelihood of behavioral escalations. And without a team of individuals to provide in-person services, families are left to manage crises on their own, day in and day out.
These are tough times. These are tough times. Autism New Jersey shared this article entitled, Managing Severe Challenging Behavior in the Home During the COVID-19 Crisis. As a BCBA, I found the article to provide useful recommendations: they are focused on keeping everyone safe and they are reasonable ones that families can implement without their support team. We hope these help! And remember, you are not alone.
Other helpful resources:
What leads to severe behaviors in Autism?
Autism 202: Addressing Challenging Behaviors Strategies for Families
Autism 204: Parent Training to Address Problem Behavior of Youth with ASD
Thank you Katrina & Erin – for sharing your experience/expertise and for the great resources.