As the working mother of a child with autism, I know all too well the incredible strain the coronavirus pandemic has caused for my autistic son. Like most children with autism, he responds best to routine, structure, and familiarity. Once schools began providing services online, and we were asked to quarantine, the difficulty of adapting to change has been noteworthy. Universally, those with autism may be experiencing emotional distress, frequent meltdowns, and social isolation during the coronavirus. Even though the debate continues as to whether or not children should return to school, it’s clear that educating our children may have to be done online for longer than we hoped.
Joyce Halpert, a school psychologist who works as a counselor for children with disabilities in two NYC public school special education programs, noted that, “In a broad sense, we need to recognize the inherent challenge in acclimating to a new learning structure, particularly for children with disabilities. Whenever we are back in buildings, students will need to readjust to the expectations of a school-based learning environment, and that will take time, too. There is a commitment to making remote learning as enriching as possible to mediate that concern.”
The prevalence of autism spectrum disorder has increased in the last 20 years. In 2004, the incidence of autism was 1 in 166. At present, the Centers for Disease Control (CDC) estimates that now, 1 in 54 children are on the autism spectrum.
There was a study done by the Journal of Autism and Developmental Disorders in 2009 that showed mothers of those with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions. You can only imagine what that study would show now.
In supporting our children during this unprecedented time, the stress of work interruptions and serving as a supplementary online school initiative adds a whole new layer. How do working parents with special needs children keep their jobs, their sanity, and still somehow act as a “fill-in” paraprofessional to help them in achieving their educational goals?
Can Working Parents Help Their Autistic Child Learn?
“For many children with autism, the goal is to increase joint attention and develop shared goals,” Halpert advises. “We hope to have kids attend to us and engage with our human qualities to hone skills of community awareness, theory of mind, and social perspective. To do so, we do our best to make ourselves engaging, animated, and interesting for our students. This is harder to do through a screen, because we are competing with other media personalities our kids love so much! There are undoubtedly profound limits to our play and socialization when we can’t physically be together.”
The lack of someone physically keeping an autistic child’s attention to learn best is where the strain can land on the parent. In the past, a child with autism would typically work one-on-one with their speech therapist, guidance counselor, or occupational therapist. Now, with remote learning, parents need to be on hand and more involved than ever.
“Before the pandemic, the goal was to work directly with the child and teach the parent how to carry things over at home,” Dr. Elise Vetere shares. “Now, the parent IS the primary interventionist with their child.”
Dr. Elise Vetere is a Diplomate in School Neuropsychology with Extensive Experience Evaluating, Diagnosing, and Providing Behavioral Interventions for Over 25 Years. She is also the Director and Founder at Early Start, which provides evaluation and services for children with developmental delays between the ages of 0 to 3-years-old. She said that at the beginning of the pandemic, both parents and the therapists at Early Start had to discern the best approach.
“My dissertation was about various special needs categories and the perceived stress of the primary caregiver. The highest group for anxiety was for children on the autistic disorder because of the behavior management issues. It cuts across to manage my child, teach my child, etc. and that’s why it was so hard for parents,” Dr. Vetere adds. “Parents have more demands and stress right now, but those who are continuing to opt for teletherapy are seeing they have fewer behavioral management issues. They can work more cooperatively with the therapist.”
She said that while it took a learning curve to process the best way to train parents and get down a routine that would be effective, expectations were better managed. That alleviated some of the pressure on working parents.
“In some homes, sick family members, work demands, or challenging childcare arrangements make addressing the health or financial stress of a family of paramount importance,” Halpert weighs in. “When circumstances have allowed parents to be actively involved in their children’s remote learning, we have heard about promising academic growth. Everyone has been impacted differently by the pandemic so that we can expect similarly ranging outcomes of remote learning.”
How Can Parents Approach Online School?
One of the concerns many parents are dealing with is how do you go from a corporate in-office job to essentially home-schooling your child? For my son, I sense that he is confused while I’m asking to do something school-related while he’s at home. It’s as if he’s thinking, “This is my house. We don’t do that here.” I asked ways parents like myself could try to introduce and reinforce this new approach to how they are being taught.
“We can often get children in the rhythm of completing schoolwork they dread most by putting it in our schedules, sticking with it at all costs, and following it with rewarding activities. You may want to skip a writing activity that your child hates just this one time because they are screaming and flailing, and everyone is exhausted! But that may make it even harder to return to, from a functional behavior perspective. It’s important to reflect on the behavior we’re reinforcing and to think long-term when it is incredibly compelling to disregard those goals in moments of distress.”
“Your frontal lobe understands cues and or the context. It’s the part of the brain that controls cognitive skills such as emotional expression, problem-solving, language, judgment, etc. In short, a child with autism only understands what they see. You can help them by creating a separate space dedicated to online school. Even if it’s a corner of their room – you are designating a place they can go to for school. You can have a timer or clock to assist in managing the schedule and create a routine either on their iPad or a simple picture schedule using drawings.”
How Involved Can Parents Realistically Be?
There have been countless articles on how parents can balance their careers and their children. In many of those cases, it’s around neurotypical children. With those who have children on the autism spectrum, it’s that much more difficult. You need to make an extra effort to engage your child, take a more active role in remote learning, manage the behaviors they are exhibiting due to the disruption to their routine, and more. Can we do it all? What’s more, should we even try?
“First of all, you want to love and enjoy your kids.” Dr. Vetere recommends. “Just live your life as a learning opportunity. If you know what you want to teach, it doesn’t have to be always a separate sit-down moment. Try to generalize it. For example, if you want them to learn to count, and you are putting blueberries into a bowl for a snack, count the blueberries together. I tell parents all of the time that more is not always better and can become countertherapeutic. If you’re constantly trying to work with your child, you’ll get stressed, and they get exhausted.”
Dr. Vetere also suggests continuing a “hybrid” role as much as possible. While the current circumstances we’re all in wasn’t intentional, it does support that the more parents are involved, even if it’s merely during the telehealth sessions, it can make a difference. There was a report on the Use of Telehealth in Early Intervention in Colorado: Strengths and Challenges with Telehealth as a Service Delivery Method. International journal of telerehabilitation, 11 (1), 33 that supports this. It showed that telehealth and family coaching strategies proved to increase family engagement and empowerment.
Halpert suggests that to help create realistic expectations, you need to create a set plan and stick to it as much as possible. “As far as best practices for home, we always emphasize the importance of schedule and routine. Routines are as important for adults as they are for our children! That can be especially helpful now, when ritualized experiences can be the only predictable aspects of our days. Maintaining set times for schoolwork, bedtime, meals, and play can be very soothing.”
Advice and Resources for Parents
As we try to look ahead, any extra tool, option or avenue to pursue can aid in keeping us sane. “Everyone is thrown off and adjusting. I think communication and social outreach is vital – to seek out support or to offer it,” Halpert proposes. “School staff understand that parents are doing their best, and I’ve seen teachers and service providers adapt to the needs of families in extraordinary ways. Lessons can be thoughtfully scheduled or recorded, homework can be modified, and virtual resources can be utilized to help parents feel less overwhelmed. There is a growing pool of great resources available for our children. Organizations like Autism Speaks have compiled lists of virtual activities to keep children engaged and occupied. Museums, zoos, and community spaces worldwide have developed virtual tours to help kids access exciting new content.”
Dr. Vetere offers these words of comfort, “I can only say this that parents usually take on their children’s failures and successes. Please know that if they aren’t flourishing as well as they once were, it’s not a result of what you could or couldn’t do. Maybe there is a regression, but they are safe, and if they learned specific skills, once, they will learn it again. In the end, they will adjust to this new normal and just like they adjusted to the old normal.”