Michael Gilberg is a Special Education attorney who is himself on the autism spectrum. His lived experience combined with legal expertise has made him a prominent voice in Disability Rights and Special Education Law. He represents families of children with disabilities in Special Education proceedings. Gilberg took some time to speak with us today, discussing what we should know about Autism Spectrum Disorder (ASD), especially in the context of the current COVID-19 pandemic. This interview has been edited for clarity.
In normal circumstances, what are common barriers of entry hindering people with ASD from getting proper care and how has the pandemic been impacting that?
With the pandemic, it’s even harder to get appropriate educational services. These families are already fighting for services, and now they’re fighting even harder because so many of these children are having greater challenges from the pandemic. From the feelings of isolation, kids who have deficits in their social skills, and kids who require individualized instruction; it’s much harder to get that instruction over Zoom than being in a classroom with a teacher.
Are you aware of ways families are learning to deal with the novel challenges that have been emerging during this time?
The problem right now is that there’s not much we can do to change the situation, due to social distancing guidelines. School districts still have obligations to teach the kids in a way that’s most appropriate, and give them what’s called “free and appropriate public education.” However, because of the current circumstances, it’s not as feasible, and not everything can be done the way it should be. I think that a lot of kids with ASD are not going to be able to receive the type of education and care they require, and instead get compensatory services later on, when restrictions begin to lift.
The problem is that regression in these kids may lead to much more remedial work later on when we try to reverse negative impacts. We’re in a kind of Catch-22 because kids cannot be physically placed in the care of qualified teachers and surrounded by their peers, and not every parent is equipped with the necessary skills to take on teaching for their child.
Can you elaborate on what “free and appropriate public education” means?
Under federal law, every American child is entitled to a free and appropriate public education. For children with disabilities and mental health challenges, like the ones Brooklyn Minds sees, part of the problem is that everyone has a different definition of what’s appropriate. Right now, the school districts are claiming to be offering services, because they provide distance learning. But if the child can’t access what they need through distance learning and it’s not working for them, the school doesn’t have many options.
What are some challenges to distance learning that are particular to those on the autism spectrum?
It depends on the individual, but by and large, let’s put it this way: I’m not seeing kids who are thriving with distance learning. Obviously, I usually get clients who are already having problems with the school district.
I’m hearing stories of kids who are not able to focus, so they get on Zoom and get distracted because it’s not like sitting in a classroom. Parents are not trained to redirect them in a way that a teacher or a teacher’s aide is. Or the parent is working from home themself, trying to do their job while paying attention to their kid, or if the family has multiple kids at home, they can’t pay attention to all of them at once.
I’m also hearing kids who are getting frustrated, so they’ll slam the computer closed, they’ll refuse to do it. If you’re at school and they say “no I’m not gonna do this,” there are people there to manage them. Parents are more limited in what they can do if the kid storms back to their room, slams the door, and says “I’m not gonna do this.”
There’s also the problem of isolation. Kids on the autism spectrum who already feel isolated are now even more isolated, because they’re at home all day and not with their peers. How do you learn peer interactions when you’re not with your peers?
If you could design what a pandemic education would look like for a child with special needs, what would that look like?
I think you would need to have more one-on-one instruction. You need to have more ability to deliver those services in an individualized, smaller environment.
I’m not sure how you’d address the social skills problem, not being around peers. Or things that involve physical interaction, like physical therapy or occupational therapy. I also don’t know if a child would be willing to talk about their mental health, their depression as much to a therapist over Zoom as they would face-to-face. So I don’t know, though it seems to be the way we’re all doing it now, this is the way of the world. I don’t know if there’s a perfect way to design something for a pandemic. But I think it ultimately involves more trained staff, which always means more money.
What can parents and families do?
I think getting an attorney or an advocate can protect yourself somewhat. Unfortunately, in some cases, one thing that’s gonna have to be done is– and I’ve said this to parents, and it’s horrible– is let them get the inappropriate services or program now, until we get back into a physical situation where compensatory services can be made up in a school setting. It’s going to be very hard to make up those services at home.
You mentioned intersections of autism and mental health– what do you see cropping up right now?
Kids on the Autism spectrum often feel “different.” There’s this feeling of isolation, I’m different, I’m not like everybody else. And it leads to mental health issues. Most people I know in the autism world have some level of depression and feeling like they don’t belong, like they don’t fit. Feelings of isolation, feelings of inadequacy. I think those are exacerbated now. Particularly for kids who have social deficits and kids who’ve struggled their whole lives in school. One of my clients called it a “cycle of failure.” And if they’re struggling now with distance learning, it’s just adding to that cycle of failure.
And when kids feel like they’ve constantly failed, what do they do? They give up.
How can people best support children on the autism spectrum?
Make sure they get that attention. Make sure they’re also getting that training, the social skills. Because again, the intersection of mental health is so important. Isolation for kids with autism is a normal issue, and this time it’s even more pronounced, and that leads to depression. There’s a reason why the leading cause of death among people with autism without an intellectual disability is suicide. Make sure they know that there are still people looking out for them, that they’re not alone, that they’re not isolated.
Michael Gilberg is one of the panelists on our 5/21 webinar, “Autism Spectrum Disorder in a Pandemic.” More information about him can be found here. More information about ASD here.
You can read more about the services we offer at Brooklyn Minds here. We are proud to have several members of our clinical team with significant expertise and experience working with ASD.
