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Families are experiencing an unprecedented interruption in educational and therapeutic services for children with autism spectrum disorder and other developmental delays. Teachers and therapists, of course, have the training and resources but most parents do not. In addition, many parents are trying to work remotely from home, taking care of other children or family members in their household, and managing the chaos of day-to-day life at home. This can be an overwhelming undertaking.
For parents of children with autism and other behavioral conditions, it may feel impossible to keep up the intensity required to follow a specialized educational or therapeutic program. While we should not expect to turn parents into behavioral therapists, there are ideas and support available to help parents navigate the unique position they’ve been thrust into.
At present, the estimated prevalence of autism spectrum disorder is 1 percent. In the U.S., approximately 1 in 54 children has been identified with autism spectrum disorder. In terms of genders, boys are affected more than girls. A significant proportion of children and adolescents cope with comorbid behavioral health problems such as ADHD, mood disturbance, and disruptive behaviors. Autism spectrum disorder can be detected through developmental screening as early as 18 months and reliable diagnosis is possible by age 2. However, a large number of children are not diagnosed until age 4 or 5 and some people even receive the diagnosis during adolescence or adulthood.
In terms of support and assistance, barriers to timely evidence-based interventions include the shortage of healthcare providers, limited capacity at autism centers, and geographic and socio-economic challenges. And today, the COVID-19 crisis throws an even larger wrench into this issue.
MindNest Health founder and Medical Director at the Yale Child Study Center, David Grodberg, M.D., is dedicated to empowering parents and caregivers by offering resources and techniques to help fill the gap in traditional support during the quarantine. His four tips are:
Think Like a Shrink: To manage children’s behaviors right now, as long as there are no acute safety concerns, parents may need to act like psychologists and try to understand what their kids may be trying to tell them through their behavior, whether verbal or non-verbal. Behaviors like tantrums, anger outbursts, noncompliant behaviors often serve the function of communicating something. Here are things to try in that situation: Is there a soothing activity you can introduce, is there something that is overwhelming that you can remove from the equation, or do they just need your attention. Find one that works, and I suspect each time it could be different, be patient with yourself if you don’t get it right the first (or second) time.
Stick to the Schedule: Many children with autism and other behavioral conditions thrive on routine and schedules. Remember: Their day-to-day has been disrupted as much as yours, and for them, this is even more difficult. Children’s entire social life and school life have been pulled out from under them—there’s got to be a lot of uncertainty and worry about when things will go back to normal. Together, develop a schedule you and your child agree upon and one that excites them. Written schedules they can interact with (cross off tasks, add a sticker of accomplishment, etc.) Turn the schedule into a predictable, comfortable activity that helps drive the day.
React with Rewards: When your child is behaving badly, it’s common to focus on the negative, but within a tantrum or outburst, there may also be something good they are doing as well. For instance, when you reacted to their outburst, did they stop even briefly to listen to you? If so, focus on that behavior: “Thank you for looking at me, for listening to my words. That isn’t easy to do.” Perhaps as part of the schedule, there are a few “free to choose” options. During a tantrum, offer that option as a reward.
Rely on Available Resources: The original goal of MindNest Health was to help support parents while they are on long waitlists for autism services. But now, because of the pandemic, we see an urgent need for this type of support right now. Reach out to your child’s counselors and educators and ask for help. Parenting takes a village, and parenting children with autism and other behavioral conditions takes a professional village, don’t hesitate to ask for help.
