The Forgotten About Casualties of Covid–Autism Families

**A shortened version of this piece was featured in the South Jersey Times on NJ.com on 3/21/21. Click here to read.

There are families in this country who are being brutalized by this pandemic. Let me be clear. I’m not referring to positive test results, ventilators or fatalities. But I’m most definitely talking about loss. Loss of skills. Loss of developmental years in the span of months. Loss of peace under one’s own roof. And at the worst of times, loss of hope.  

COVID came in like a wrecking ball and shattered many autism families to pieces. 

And for some reason, hardly anyone is talking about it.  

I work as a family advocate for a non-profit agency in South Jersey. Out of the dozens of families on my caseload, those with children on the autism spectrum have been impacted by the pandemic most acutely. By a landslide.

You see, children with autism who are in highly specialized programs simply can not access their education virtually. Let me say it louder for the people in the back: THESE CHILDREN CAN NOT LEARN THROUGH A COMPUTER SCREEN. Period.

Further, the assault of virtual learning has caused such extreme frustration and anxiety that children are acting out aggressively toward themselves (self-injurious behavior) and other family members. I have mothers reporting that their children are banging their heads against screens and keyboards. Others are being attacked by their children, with bruises and bald spots on their heads to prove it. These families are in crisis. And virtual learning is to blame.  

And I haven’t even mentioned regression in academic and functional skills yet. Sadly, the impact has been just as catastrophic.

For many families living with autism, educational victories are incredibly hard-earned. To see skills that took years to establish vanish in a puff of pandemic smoke is a tragic pill to swallow. The word heart-breaking doesn’t do it justice.

Virtual learning is simply not compatible with the specially designed instruction that children with autism need (and is outlined in their IEPs). Things like physical interaction with highly trained educators and behavior plans that must be implemented with fidelity. They learn best in highly structured classroom environments. Without the appropriate delivery, meaningful learning will not take place. 

The teachers and school administrators that I’ve spoken to are very aware of what’s going on with this population and they are deeply concerned about it too. They report that their hands are tied though. Since March 2020, public schools with autism programs and private schools for children with disabilities have had to close their doors for days, weeks, and months at a time in order to ensure the physical safety of staff and students. They are given directives by the state and county health departments that must be followed. Some children with autism cannot wear masks nor social distance safely, which can put staff members at increased risk. I get it. I don’t think anyone would argue against taking the proper precautions to ensure that there are no viral outbreaks in our schools.

But, we’re almost one year into this mess and the excuses are wearing thin. I’m tired of hearing that these are unprecedented times. I’m tired of hearing that there’s nothing else that can be done. And I’m REALLY tired of the reasoning that all children are being affected by the pandemic, so the families of children with special learning needs just have to deal with it like everyone else. 

The critical distinction here is that other children CAN learn virtually. Children with higher levels of need, including many of those on the autism spectrum, can not. These children are NOT receiving an appropriate education as mandated by IDEA (the special education law of the land). Not even close. And I have the data to prove it.

Other children can pivot from one learning environment to another relatively easily. Many children with ASD, who rely upon routines and lack flexibility as a coping mechanism, can not.  

Other children can engage with their teachers and classmates in a meaningful way through a computer screen. Many children with ASD, who struggle mightily with attention and focus, can not.

Other children can use language to communicate, express frustration, and ask for help. Many children with ASD, who have limited verbal skills, can not. 

One parent shared that there are some days in which her child receives about 5 minutes of instruction via Zoom. He just can’t stay engaged any longer than that. Another parent last week reported that her daughter has only mastered 1 out of the 15 goals in her IEP. And the year is more than halfway over. 

I hear similar stories from my colleagues. The inability of schools to stay open to the maximum extent possible for in-person learning is affecting students on the autism spectrum exponentially. 

Now, I realize that I’m painting this issue with a very broad brush. Something that I’m reluctant to do when discussing children with unique learning needs. There are some students who have adapted quite well to their new normal. But that doesn’t mean we turn a blind eye to the hell that some families are living through. It would be negligent to do so.

Where Do We Go From Here?

I applaud the school districts that are rising to the challenges that the pandemic has presented. The administrators who have found a way to keep a handful of classrooms open for in-person instruction, even when the rest of the staff and student body are learning remotely. The schools that are sending trained behavioral staff into homes to assist parents with instruction. The states that have already developed a plan to provide compensatory education for the children who have not been able to access their education. The educators who have been responsive to parent concerns, and are accepting full responsibility for educating students with disabilities to the greatest extent possible.

Parents, if you’re reading this, it’s time to take action. Ask your school district for exactly what you need. Put your requests in writing. If they say they cannot honor your request, ask why not? Ask to see the written policy. Work together with other parents facing similar challenges and make sure your voices are heard. Make an appointment with your superintendent and share what’s happening in your home. Ask what the plan is to help your child make up for the skills that were lost. 

Document, document, document. Grab a simple notebook and keep track of how much time your child is actively engaged in learning each day. Document the behaviors that you’re seeing. Document the regression. 

Take a look at your child’s IEP. Is progress being made toward their goals? Are they on track to meet them by the end of the school year? Inquire about progress monitoring and ask to see the data that has been collected.  

Teachers, if you’re reading this, please advocate for these families. Speak up at IEP meetings when you know that a child hasn’t received an appropriate education, through no fault of your own.

Administrators, if you’re reading this, please do whatever it takes to make in-person learning available to these children on a full-time basis. Please be fair when you’re evaluating the need for compensatory education, realizing that these families have been in crisis mode for nearly a year now.

Federal and state policy-makers, if you’re reading this, please provide relief to school districts in the form of funding specifically for the implementation of the IDEA. Strongly consider extending educational services through age 22 (instead of age 21) for the students who have been impacted the most.  

The future is uncertain, but there is one thing that I know for sure. These warrior families will weather the present storm. Although they are weary, they will put the pieces of their fractured families back together again. Because that’s what they do. Resilience is one of their superpowers. 

In the meantime, we must acknowledge the suffering that is happening in our communities at the hands of virtual learning. Instead of playing the blame game though, let’s channel our energy toward solutions. There is so much work to be done. Let’s roll up our sleeves and get to it. There is a cure to this educational pandemic. And it doesn’t even require FDA approval.

It’s called school.