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We sit down with Angela Nelson, a seasoned health care executive, to discuss the critical role of parent involvement in applied behavior analysis (ABA) therapy for children and teens with autism spectrum disorder (ASD). Angela shares insights on how health care professionals can foster collaboration with parents, address challenges in balancing evidence-based practices with parental preferences, and ultimately enhance the effectiveness of interventions for children.

Angela Nelson is a health care executive.

She discusses the KevinMD article, “How parental preferences and evidence-based practices intersect to achieve success in intervention programs.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast. Today, we welcome Angela Nelson. She’s a health care executive. Today’s KevinMD article is “How Parental Preferences and Evidence-Based Practices Intersect to Achieve Success in Intervention Programs.” Angela, welcome to the show.

Angela Nelson: Thanks for having me.

Kevin Pho: So, let’s start by briefly sharing your story and journey.

Angela Nelson: Yeah, absolutely. Let’s see—gosh, I, I’ve always been fascinated by autism and developmental disabilities. Way back when I was, I think, 12 years old, I babysat for a boy with autism and kind of never looked back. Always wanted to work in that field. Fast forward to today, I’m a clinical director of a behavioral health company called Rethink Care. And yeah, I get the pleasure of working with both neurodivergent individuals in the workplace, as well as parents raising neurodivergent kids and teens. So, I’ve kind of stayed with that journey the whole time, and, and I love it.

Kevin Pho: All right, perfect. Let’s talk about your KevinMD article now, “How Parental Preferences and Evidence-Based Practices Intersect to Achieve Success in Intervention Programs.” Now, before talking about the article itself, tell us what led you to write it in the first place.

Angela Nelson: Yeah, so when I look back at my time as an early BCBA—board-certified behavior analyst—I think about, you know, being very rigid and by the book, thinking about, OK, parent training: this is how it has to go. And parents need to take data, and parents need to do this, and parents need, need, need, right? And as I’ve kind of grown in my career and moved away from working directly with kids and teens, and now working primarily with their parents and caregivers, my thoughts have evolved on what parents “quote-unquote” need, right?

And, you know, we really wanted to write a piece to help inform other clinicians out there, to remind them that it’s important to zoom out. The objective is not to make parents be little mini-therapists, right? We want to help them foster relationships with their kids, work on their communication with their kids, their connections, empower them with skills. I really don’t even think I use the term “parent training” anymore. What does that really mean? We’re not trying to train them to be parents, you know?

So, I wanted us to kind of think more broadly and zoom out as a field and elevate parents, treat them as partners in that relationship. So that was kind of the impetus for writing it.

Kevin Pho: So tell us about some of the obstacles you see parents facing that may impede the optimal care for their children.

Angela Nelson: Yeah, that’s a good question. I think, you know, there are so many great things about the internet these days, but certainly one of the downfalls is you can get sucked into the rabbit hole where you see some, maybe, testimonial or something online that’s kind of, you know, it’s not evidence-based, right? But someone says, “Oh, this product or this particular approach worked for me; it’s a miracle.” And of course, when you’re a parent, you want to do everything you can for your child. You love your child and you’re very invested. And so I think sometimes parents get sucked down and then end up spending so much time and money in ways that are maybe counterproductive. So, yeah, I think that’s definitely one thing I see.

Kevin Pho: And in your article, you talk about applied behavior analysis. So, tell us more about that.

Angela Nelson: Yeah, ABA. So, it’s kind of a branch of psychology. It’s hard to boil it down, but essentially, it’s a way of studying human behavior and looking at how environmental factors affect us. It’s kind of a collection of different teaching methodologies. We look at things like how positive reinforcement affects behavior, manipulating different things in the environment to perhaps increase and teach new skills that can be advantageous, and also perhaps reduce harmful behaviors and so on.

So, it’s sometimes synonymous with the type of therapy that is the gold standard for autism, but it is also an overall branch of psychology—a field of study.

Kevin Pho: All right, so talk about your article itself for those who didn’t get a chance to read it.

Angela Nelson: Yeah, absolutely. The article itself really is about finding that intersection between suggesting evidence-based practices and really elevating parental preferences. And I go into five main tips for finding that balance. Kind of in short, those tips are: making sure we’re building good rapport and trust with our parents. We want to have that good communication. We want to employ skills like active listening, really making sure that parents feel heard and that we understand them.

You’re probably familiar with this concept, too, Kevin. Number two is avoiding clinical jargon. Essentially, we want to be approachable and have a good partnership. We see this a lot with newly minted BCBAs. I can remember a couple of times early in my career, I thought, “Oh gosh, I think this would be a great way to establish myself.” I didn’t have kids yet, so I wanted to be seen as an expert, so I would use some of the big language. But that would backfire because parents, they didn’t know what that meant. They started to kind of disengage, so we really want to make sure we’re using approachable language.

Number three, I talked about cultural humility, which is kind of a progression of cultural competency. It actually came out of the nursing literature. The underlying principles of cultural humility say we want to dispel power imbalances. So, kind of similar to number two, we’re dispelling power imbalances between us as clinicians and the parents. We want to elevate them as equal partners in that collaborative relationship, commit to lifelong learning, and be self-reflective. It’s just a really good way to make sure we’re coming together with parents.

Then, for the fourth tip, I talked about setting goals together, getting parent feedback, and frequently reassessing how we’re doing. It’s really important that parents are at the forefront of the work we’re doing with their kids. If they have a goal, we really want to do everything we can to try to address that goal. I remember working with a family, and the family’s number one goal was that their child greet the grandparents when they came in. And for me, I’m thinking potty training, reducing tantrum behaviors, and all these things, but at the end of the day, the parents are going to be much more involved and motivated to be on board with this program if we honor their requests as well. So, getting their feedback and starting and continuing with those goals together.

And lastly, when in doubt, review the data together in a friendly way—a data-friendly way, right? So, the parents are with the kids all the time; they may not see the small, minute progressions. And so, it’s helpful to maybe graph some data and look at ways that we can analyze it very simply for them. That way, we can work together and show them. And if progress isn’t being made, then we can also be able to see that in the data. It’s just another way to come together with parents and collaborate.

Kevin Pho: So, give us a case study—a successful case study—where some of these interventions made an appreciable difference in the care parents provided for their children.

Angela Nelson: Sure, yeah, absolutely. I can think of some more recent ones where, now, I’m not working directly with the kids; I’m working solely with the parents. So, the parents are essentially my clients. I can think of a few case studies. I’ll give you an amalgam of different examples.

Essentially, before I do anything, I always start with rapport. I want to make sure they know that I have their child’s best interest in mind. It’s not just implied; I really want to explicitly say that, and that I believe they can be very effective teachers for their kids. I think a lot of times, parents sell themselves short. And so, the empowerment piece is really, really important. Starting there, talking about their strengths, talking about the things that are going well in the home, and really coming from a strengths-based approach can be very, very helpful.

And then, of course, getting down to, “What’s concerning you? What keeps you up at night? What are your hopes and dreams for your child?” Then we can really get into, “Let’s look at removing barriers, let’s look at ways we can approach teaching your child, really building them up, empowering them, making them feel good, and then making yourself available to troubleshoot when possible.” I think that has been a really successful path forward with parents.

Kevin Pho: So, tell us about some resources for parents who have children with Autism Spectrum Disorder. Where can they turn for help? Because, as you know, there’s no manual for this, and sometimes parents are just going it alone. What kind of resources can you recommend?

Angela Nelson: Yeah, absolutely. It can be lonely. So, we always tell parents, first and foremost, connect with your family doctor or pediatrician. They’ll often know about local resources. The school district is another resource; a lot of parents don’t realize the free services available. Kids can receive services even before they’re five years old through the school system, and once they turn five, there are other types of services that can kick in.

For instance, here in California, there’s the regional center system funded by the Department of Developmental Services. There’s also the Parent Center Hub, which can help parents find advocates and resources in their state.

And I think one of the biggest things, too, is the power of parent networks. Connecting with other parents online can be a good way to share information. Again, as we talked about earlier, you want to be an informed consumer, so make sure that what you pursue has evidence behind it, but it’s a really good way to gather more information.

Kevin Pho: What about times when there’s a lack of progress that requires adjustments to the therapy plan? How do you involve the parents in the process?

Angela Nelson: Yeah, so we want to figure out why there’s a lack of progress. There could be a myriad of reasons. It could be that the child doesn’t have the fundamental skills, so maybe we need to backtrack. Or, sometimes, it might be that parents haven’t been as involved. Early on in my days doing ABA therapy in homes, parents would sometimes treat it like babysitting—they’d step out when I arrived, thinking therapy was just something that happened in the background.

But it’s really important—especially with the modern ABA—that parents are central to the process. So, it might be about sitting down and saying, “OK, let’s look at these data. We’re not seeing a lot of movement here.” And we want them to feel comfortable saying if they weren’t able to fully participate or had trouble implementing the plan. That openness helps us identify barriers and go from there.

Kevin Pho: We’re talking to Angela Nelson. She’s a health care executive. Today’s KevinMD article is “How Parental Preferences and Evidence-Based Practices Intersect to Achieve Success in Intervention Programs.” Angela, let’s end with some of your take-home messages that you want to share with the KevinMD audience.

Angela Nelson: Sure, absolutely. I think one of the main things is to put yourself in parents’ shoes. Ask yourself, “What kind of BCBA would you want coming through your door?” Put yourself in their shoes, and approach them the way you’d want someone approaching you. Also, even if you’re working in the home with the child, the child can’t be your only client—the family needs to be your client.

If we’re not collaborative and not honoring the family’s opinions and desires, we’re starting at a major deficit. So, put parents at the forefront, highlight and honor what they want to work on. You’re going to get more buy-in and motivation from them, which likely leads to more progress for the child. In the end, everybody wins.

Kevin Pho: Angela, thank you so much for sharing your perspective and insight. Thanks again for coming on the show.

Angela Nelson: Thanks for having me.