By Anita Norman
Departure from routine can be especially hard for children with developmental disorders, and the changes to daily life wrought by the pandemic pose an extra challenge for them and for their families.
Yale’s Dr. Fred Volkmar, a leading authority on autism and related disorders, spoke with YaleNews about the needs of such children and ways parents and other caregivers can help them during the public health crisis.
Volkmar, the Irving B. Harris Professor of Child Psychiatry, Pediatrics, and Psychology in the Child Study Center at Yale School of Medicine, is the primary author of the American Psychiatric Association’s section on autism and pervasive developmental disorders in its latest edition of the “Diagnostic and Statistical Manual of Mental Disorders.”
He also serves as editor of the Journal of Autism and Developmental Disorders, and he co-edited the the forthcoming book “Autism Spectrum Disorder in the First Years of Life Research, Assessment, and Treatment,” with Dr. Katarzyna Chawarska. The book is scheduled for release in August.
Interview condensed and edited.
Can you define developmental disorders?
Developmental disorders include a range of problems that are generalized into the term “developmental delays.” This is what we used to call mental retardation, but now we call it intellectual disability, which is one of the most common forms of developmental disorders.
There are also specific challenges a person might face, things like language disorders and learning disabilities. Those are very common in schools, but kids can do well with intervention.
Then there’s autism and autism spectrum disorders. These are increasingly not associated with intellectual disabilities because kids are getting better with intervention. Many children on the spectrum are going to college now — which is great, but they have their own challenges due to the unpredictability of the college scenario. As these children get older, they may deal with anxiety or depression because, unfortunately, they experience quite a bit of bullying. We certainly want to address the challenges of their disability in addition to the emotional stress the child may face as a result.
During this pandemic, what challenges are children with developmental disorders experiencing?
Usually kids are out of school over the summer and those with development problems often experience some degree of skill loss or regression because teachers aren’t present to help them regularly. Of course, now with the pandemic, that is further compounded due to the length of time they’ve been out of school.
We have parents who would like to be helpful while their children are home but they don’t usually have the support of teachers and other specialists in the schools. Kids on the autism spectrum aren’t getting educational activation, behavioral work, or regular physical activity and exercise. On top of that, they don’t do well with change, which is the hallmark of our current moment. It would be good to get these students back to school in the fall because that structure is just so important.
What can a parent or caregiver do to support their child with developmental delays especially during COVID-19?
If you go onto Google and type “autism,” last time I checked, you’d get 140 million hits. This situation is really overwhelming parents who are stuck at home looking to help their child. Obviously, teachers would be a good resource, and in some ways, they are the best resource if they are available online. Teachers know their students well and might be able to suggest something to help parents.
The saving grace in all of this is that technology can help.
Technology is predictable, and this is good for kids who need consistency. The downside is you have to tailor the technology to the child. That’s where the pedal hits the metal because we need something easy for parents who are trying to address the specific needs of their child. You can’t just give someone an iPad. You have to have some vision of what you want to be doing. You can get applications and programs that are focused on a particular skillset and, luckily, they often present as games.
For example, executive function skills or organizational skills can be taught through technology that is targeted. There’s a whole set of programs related to a series of books called “Smart but Scattered” that are great because they span many age groups, going from school age all the way through high school. The books have computer programs that correspond to various lessons, and it’s like playing a game, but you can monitor a child’s progress. We need more of this type of programming that moves a child along and is fun for them to complete. But you can’t leave a child unattended on the internet unless you have some degree of parental control. You want to engage kids with intentional online resources.
Can you talk about specific structures that parents can add to daily life to better support children with developmental disorders?
The kids are out of their routine. The good news is they’re at home, which is a familiar place. However, they’re not moving their bodies, which is a problem because the more active the kids are and the more exercise they get, the better their behavior tends to be. There’s pretty good data on that.
So, because they’re not out and doing stuff in school, the absence of programming needs to be accounted for. Structure is good. Having a schedule that’s right out on the bulletin board is a useful tool to consider.
To the extent that we can in this unpredictable time, providing stability and using things like schedules, will help us stay organized and our children calmer. For example, nine to ten is work time, ten to eleven is play time, eleven to twelve is free time, so on and so forth. Maybe even have pictures to correspond with the activity and the time to really help the kid understand.
Having the day organized in blocks of work and play will be useful. When thinking about the work time, look at things that the child has been doing in school. For many kids they will have what’s called IEP or individualized educational programs. And those programs will talk about what the child is working on. It will have positive statements of what the child should be mastering, and those are good clues as to where you all can put your attention. If you see that the kid has mastered them, then you can expand to the next level.
How can parents ensure their child takes public health precautions?
It’s so important to remind your child as many times as it takes of the potential dangers. For people with development disabilities who don’t understand all the rules, we have to be really helpful to them so they are not exposed more than they have to be. We obviously don’t want them in the hospital setting isolated and without specialized care or care from their supporters. It would be a real challenge to the medical staff and to the child.