Dealing with the new world order under the invisible cloak of COVID-19 creates frustration, fear and uncertainties. For everyone, surviving the changes requires patience, flexibility and an even-headedness that challenges even the strongest of wills.
For one in 54 children and their parents who live with Autism Spectrum Disorder (ASD), the challenge can seem insurmountable. These children thrive on structure, and their daily routines have been upended, losing even their main constant of attending school.
CU Anschutz Today recently sat down (virtually, of course) with Robin Gabriels, PhD, a licensed clinical psychologist with Children’s Hospital Colorado and professor and researcher in the area of ASD and its related disorders in our Department of Psychiatry.
Gabriels’ patients with ASD often lack executive functioning skills, such as flexibility, planning, organizing, processing information, starting tasks and managing emotions – every one of which is essential for being resilient while living through these unusual times.
These children need help maneuvering through their new realities, a burden that falls largely on their parents and caregivers. Leveraging evidence-based research, Dr. Gabriels shares valuable insights for ASD caregivers, from what pitfalls to avoid (e.g. the pull of getting lost in video games) to strategies to help children and teens cope (learning emotional triggers, creating new structure, teaching relaxation skills, etc.).
Gabriels, lead researcher of a study that found positive behavioral impacts from therapeutic horseback riding (THR) in children with ASD, is recruiting for a follow-up study looking at the physiological impacts of this type of therapy on children with ASD. Children ages 6-16 with ASD and another psychiatric diagnosis (e.g., ADHD, anxiety, depression) are being sought for the 10-week study. Call or email Gabriels at 720-777-3404 or email@example.com.
Deb Melani, Host Welcome to CU Anschutz Medical Campus 360, a podcast about the CU Anschutz Medical Campus. We feature faculty, staff and students, and their interesting and innovative work. I'm Deb Melani, the science writer in the Office of Communications.
Today, I'm talking with Dr. Robin Gabriels, licensed psychologist and founder of the Neuropsychiatric Special Care Program at Children's Hospital Colorado. Dr. Gabriels is an autism and human animal interaction researcher and professor in our Department of Psychiatry. She joins us today just as April's Autism Awareness Month comes to an end, to share advice on caring for children with autism during the COVID-19 crisis. Good morning, Dr. Gabriels, thank you for joining us.
Robin Gabriels Thank you.
Deb Melani COVID-19 has affected many children by creating new dynamics that are difficult for young minds to comprehend, like: "why can't I see grandma?", "Why can't I go to school?" These disruptions and normal schedules can be even more trying for children with autism. Can you talk about how and why that is?
Robin Gabriels Sure. So, children with autism have social communication and behavior impairments, and they also have some very unique learning styles that make them particularly susceptible to experiencing stress anxiety resulting from major shifts in their daily routines, like what's happening right now with COVID-19. For example, they tend to have a hard time with executive functioning skills, which are things like: being able to be flexible or plan and organize, process information, start tasks on their own without prompting, and being able to manage their emotions.
And these are skills that are needed for a person to adapt well to adversity or change like what's happening right now. In other words, to be resilient. However, those, those skills of resilience and being able to plan and organize and be flexible don't come naturally for this population. And they require a lot of specialized teaching opportunities, as well as a lot of external structure from a lot of different sources like caregivers, school providers, therapists. And even in home therapist and community activities.
And one of the biggest shifts that's happened for kids with autism during this time is that their external school routine has stopped. So, their caregivers have had to think about how they're going to replace that structure that was in place for the majority of the child's day. And for some kids that was a very tight schedule of activity for activities and in-home providers. Which of course is hard to do when we're all staying at home in our own homes. So, this can be really tough on caregivers to provide that high degree of structure that these kids need to acquire adaptive life skills.
Deb Melani Yeah, that does sound tough. What about the online school itself? Many parents and the students are struggling with that. What are your patient families with autism reporting?
Robin Gabriels Well, I've heard a few things from parents and teens with autism that it's really hard to adjust to the fact that many teachers are giving tons of extra work without giving a lot of guidance or rationale. And it's also hard to adjust to the change of what does it mean to do school at home? That's just a new concept for these kids and, and some caregivers are saying that even just that idea of having to do school at home versus what they're used to, which is homework. It's hard for them to kind of wrap their brain around and think about, "Well, why am I doing this extra work when usually my homework is shorter?"
So, as I said, kids with autism have a hard time with change. They also take things very literally and that's a good example of that. But unfortunately that causes these kids to get pretty frustrated with changes that aren't thoroughly explained or when expectations don't make sense, or they don't have a logical rationale or end point. Which is, I think one of the problems with just loading on a lot of schoolwork to do, but without a real rationale. But on the positive side, kids with autism are also very visual learners and some parents are saying their kids are tolerating doing schoolwork much better because the online work is visually engaging.
But the tricky thing is that if they're not supervised, many of these kids might wander away from the schoolwork, the online school work into other internet sites, including YouTube or video games. And for kids with autism life on the computer can be definitely much more appealing than real-world activities because it's visual, very visual. And it's more concrete and understandable at times. And the research on electronic use in this population has indicated that compared to their same age peers, kids with autism tend to spend excessively more time playing video games.
And this along with having unlimited access to video gaming, predicts their engagement in oppositional behaviors. So it's really important for caregivers to monitor and limit their internet and video use.
Deb Melani So right now, resilience is kind of the word of the day. Can you talk about why being resilient can be more difficult when living with autism?
Robin Gabriels Sure. So, the idea of resilience is especially important right now during these tough times. And it requires the ability to be flexible and adapt to adversity and learn from challenges and challenging situations. But the autism learning styles I mentioned are kind of the opposite of what resilience is and these behaviors don't come easy to kids with autism. They have to be taught resilience skills like: how to understand their emotions, what their triggers are, what's setting them off. Many times I hear parents say, "I have no idea why they're having a tantrum. It just seemed to come out of nowhere."
And so, teaching kids to understand their early warning signals, their thoughts, their body reactions and emotions, as well as what their triggers are. Helping them kind of organize triggers and emotions from mild to severe on a visual emotion rating scale is sometimes helpful. And then practicing coping skills. Using role play to help them practice. Maybe taking space or asking for help. But other resilience skills are things like considering the facts of the situation, as well as what they can learn from their mistakes.
Some of these kids are just terrified by making a mistake. But once they realize that mistakes really are helpful, and sort of learn to think about it a different way that can really help them move forward and not get stuck in one kind of concrete way of [thinking].
Showing them alternative strategies or things they can do is maybe drawing a roadmap on paper to review. Like at the bottom of that roadmap: what's the triggering event or the situation was, and then there's a fork in the road. And it can take two paths: to the right and to the left, that can be different response choices, maybe some positive response or some negative response, depending on the road and then their positive or negative outcomes that it can lead to.
And that's really helpful to give them the bird's eye view of situations and how they can do something different and what they can do.
Deb Melani That's really useful information. Are there any other strategies parents can use to encourage resilience?
Robin Gabriels Sure. Encouraging positive thinking is important. And that can be as simple as just finding a time to sit down with your child every day, like after dinner to review three things the child is thankful for, did well that day. And they can turn it into a back and forth, turn-taking thing: where the child thinks of one thing and the parent thinks of one thing about the child. And then they do one together. But then if they write those things down - they can not only help encourage the positive thoughts during stressful times, the child can also review them later when they are stressed and remember the positive things during that time.
As I said a little bit before: other strategies help them think of what they can do, because these kids tend to get stuck and feel stuck. And they have a hard time generating new ideas, so they may need some suggestions or maybe even just a menu of things, alternative things they can do when they can't do what they want.
And definitely doing physical exercise is important for all of our wellbeing, but it's hard for kids with autism. They tend to be pretty sedentary. And like I said, they tend to want to watch, look at some videos, and the visual things. But taking a brief walk, for even for 15 minutes, can be added to their daily schedule. Before they can move on to another preferred activity. So, that could be motivating for them to just put it in their schedule so they get used to it. They love routines and that's the benefit of schedules for this group. But then strategically putting it in there. Where there's a 'less preferred' like walking, and then a 'more preferred.'
Deb Melani Yep, that's good advice for all of us right now.
Robin Gabriels Mm-Hmm (affirmative, laughs).
Deb Melani (laughs, then asks) I think that a lot of us are finding our pets particularly comforting, as we lose other in-person social connections. Why is that? And could pets be a good coping mechanism for kids with autism?
Robin Gabriels Absolutely. Human animal companionship and human animal interaction research is now getting a lot more attention. And the outcomes are showing very positive, social and emotional outcomes for kids with autism. I've definitely done research, but also anecdotally I have included our hospital therapy dog in sessions with kids with autism and typically they have high levels of anxiety. And it's really amazing just after the first, or within the first session, kids are reporting feeling calmer, their behaviors are calmer and more relaxed, their body posture, and calmer voice and more articulate.
Deb Melani That's really awesome. Well, you were supposed to be launching a recruitment right now for a followup study on the impacts of therapeutic horseback riding in children with autism. Is that still happening or has COVID-19 kind of pulled back on...
Robin Gabriels (finishing the phrase)...Back on the pull back on the reigns for us, so to speak? (laughs) Yeah. I love that. We're actually still recruiting. We're just starting the sort of study startup things, but we are starting to recruit participants with autism and also they have to be kids with autism with co-occurring psychiatric diagnoses - kids who tend to be fairly dysregulated. And this is a followup study for our therapeutic horseback riding work. This one's going to be a five-year multi-site study mostly at Colorado and Maine to understand why therapeutic horseback riding has significant benefits in behavior, social and communication skills for this population in our previous large randomized trial.
Deb Melani When do you see it actually taking off?
Robin Gabriels It's pretty undefined right now. We're still going to need to go with what we're allowed to do. And certainly this study will involve a lot of engagement in close proximity to others and touching objects that are in common and using facial expressions to communicate. So my anticipation is that: when there is in particular a vaccine identified, and hopefully that would be in the winter, that we can start like a spring group or something like that.
Deb Melani Oh, I hope so.
Robin Gabriels Thank you.
Deb Melani All right. Well could you end with some final words of wisdom for parents with children with autism, as we move forward into these uncertain times?
Robin Gabriels You know, it is uncertain. And with all this restricted access to our fast paced, multitasking social world that we can actually learn at this time somethings that kids with autism already value. They definitely value a slower pace in a narrow focus on each task at a time, because this promotes in them a calm kind of mindful manner. And I think that holds true. I mean, maybe some people have already experienced that. That slower pace. It's definitely been a lot calmer for them too.
Deb Melani Yep. That's advice that we can all use. Well, thank you so much, Dr. Gabriels for your time and insights today. We appreciate both. So, have a great day.
Robin Gabriels Thank you. You too.
[Music - Acknowledgments and Credits]
‘CU Anschutz 360’ is produced by the University of Colorado Anschutz Medical Campus. Story editing and production by Deb Melani and Chris Casey. Mix and tech production by Kelsea Pieters and Matt Hastings. Digital design by Sarah Adams and Jenny Merchant.
A special thank you to our guest this week, Robin Gabriels. You can read more about her therapeutic horseback riding research - and the other latest stories and breakthroughs on our campus - at news.cuanschutz.edu.. This is CU Anschutz 360.
Disclaimer: Transcripts are generated using a combination of speech recognition software and human transcribers. It may contain minor differences from the audio, including some edits for clarity in print. Please check the recording and with the Communications team before quoting.