How to engage parents in autism therapy [PODCAST]

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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. I’ve always been fascinated by autism, developmental disabilities. Way back when I was, I think, twelve 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 company called RethinkCare. And 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 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 we talk about the article itself, tell us what led you to write 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 being very rigid and by the book and thinking, “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 kind of evolved on what parents “need,” right?

And we really wanted to write a piece to help inform other clinicians out there, to kind of remind them that it’s important to zoom out. And 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, the connections, empower them with skills.

I really don’t even, I think, use the word “parent training” anymore. What does that really mean? We’re not trying to train them to be parents. So I wanted us to kind of think more broadly and zoom out as a field and kind of elevate parents and really treat them like partners in that relationship. So that was kind of the impetus for writing it.

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

Angela Nelson: Yeah, that’s a good question. I think there’s so many great things about the internet these days, but certainly one of the downfalls is you can get sucked into the rabbit hole, or you see maybe a testimonial or something online that’s kind of, 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 they end up spending so much time and money in ways that are maybe counterproductive. And so I think that’s definitely one thing that I see.

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

Angela Nelson: Yeah, ABA. So it is kind of a branch of psychology. It’s hard to kind of boil it down, but essentially, it is a way of kind 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 our behavior. We’ve got kind of manipulating different things in the environment to perhaps increase and teach new skills that can be advantageous for us and also perhaps reduce maybe 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 just kind of overall a branch of psychology. It’s a field of study.

Kevin Pho: All right. So talk about your article itself for those of you that get a chance to read it.

Angela Nelson: Yeah, absolutely. So the article itself really is: How do we find that kind of intersection between suggesting evidence-based practices but really elevating parental preference? And I go into five main tips for that balance.

I think, 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 those skills like active listening. We really want to make sure that parents feel heard and understand that we understand them. You probably are familiar with this concept too, Kevin.

Number two, avoiding clinical jargon. Essentially, we want to be approachable. We want to have a good partnership. We see this a lot with newly minted BCBAs. I can remember a couple times earlier 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, and 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. What it says, and kind of the underlying principles of cultural humility, is we want to dispel power imbalances. So kind of similar to part two or number two, but dispelling power imbalances between us as a clinician and the parents. We want to elevate them as equal partners in that collaborative relationship. Lifelong learning. We want to be self-reflective. But it’s a really good way to make sure that we’re coming together with our parents.

Then for the fourth one, I talked about setting goals together, getting parent feedback often, and frequently reassessing: How are we doing? It’s really, really important that the parents are in the forefront of the work that we’re doing with our 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 that family’s number one goal was that they had their child greet the grandparents when the grandparents would come. And for me, I’m thinking potty training, reducing tantrum behaviors, 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 we want to get their feedback, start and keep going on with those goals together.

And then lastly, when in doubt, review the data together in a friendly way, data-friendly way, right? So the parents are with the kids all the time. They may not see the small, minute little ticks up of progress. And so it is helpful to maybe graph some data, look at ways that we can analyze it very simply for them, so we can work together and show them. And if the progress is not being made, then we can also be able to see that in those data. And 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 made for their children.

Angela Nelson: Sure, yeah, absolutely. I can think of some more recent ones where now I’m not working with the kids. I’m working solely with the parents, so the parents are my client, essentially. Case study. So I think I’ll kind of give you an amalgam of different things.

Essentially, before I do anything, I always start with rapport. I want to make sure that 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 that 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.

So starting there, talking about their strengths, talking about the things that are going well in the home, and really coming from a strength-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, “OK, let’s look at removing barriers. Let’s look at ways that 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 that has been a really successful path forward with parents.

Kevin Pho: So tell us some type of resources parents have with their children on the autism spectrum disorder. Where can they turn to 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 your pediatrician. They’ll oftentimes know of more of those local resources.

The school, the school district. A lot of parents don’t realize all the free services that are available. You’ve got services prior to five years old where kids could take advantage of the school system, believe it or not. And then once they turn five, they can start doing, the services kind of change, but they will empower parents with knowledge and information about, “OK, you can approach the school, talk about your concerns.” There can be an evaluation done free of charge for you on your child. And they can assess the types of services. Maybe it’s speech therapy, occupational, physical therapy, and maybe mental health services that can be done through the school district.

Depending on the state too, like I’m here in California, there’s a regional center system funded by Department of Developmental Services. There’s all sorts of different things that are out there. There’s also kind of a parent network. So it’s Parent Center Hub, I believe it is, where you can go in and find your state and find advocates. And there’s numbers for each state where you can say, “I have a child with such-and-such disability. I’d like to learn about the local resources in my area.” So there’s a lot of things out there.

I think one of the biggest things too is the power of the parent network. So connecting with other parents online could be a really good way to share information. Again, as we talked about earlier, you want to be an informed consumer. Make sure that what you’re actually going to pursue has some evidence back behind it. Maybe vet it with your doctor. But it is a really good way to gather more information.

Kevin Pho: So what about times where there’s a lack of progress that required adjustments to the therapy plan? So in these cases, 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, right? And there could be a myriad of reasons for that. It could be that perhaps the child doesn’t have the fundamental or kind of stepping-stone skills first, so maybe we need to backtrack. Maybe, and sometimes it’s helpful when we frame this in a way, we don’t want parents to feel defensive, but it might be that the parents haven’t been involved for one reason or another.

I remember early on in my days doing ABA therapy in the homes, a lot of times the parents, I felt, would kind of treat it like babysitting, like, “Oh good, Angela’s here. OK, I’m going to go do my thing.” And then it was like, “OK, a little bit of therapy was just sprinkled, and then great, more progress,” right?

But what’s really important, especially more with the modern ABA, is the parents need to be a really central part of that process. And so it might be assessing and looking together: “OK, let’s look at these data. We’re not really seeing a lot of movement here. How’s it going on your end?” Really kind of allowing them and encouraging them to come forth if they have some concerns.

A lot of times, it’s parents, maybe they wanted to be agreeable, and they really want it to work, but they privately didn’t really understand what they were supposed to do. And so we want them to feel comfortable coming forward and saying, “You know what, guys? I’m so sorry. I really didn’t do anything here on my end. I wasn’t really familiar or sure of myself.” Those are good indicators that they feel comfortable being honest and open.

So that’s where you can start diving in, troubleshoot: “Oh, OK, let’s back up a little bit. Do you have any questions about this?” Maybe model it, role-play it, these sorts of things. So there’s a variety of reasons why it could stall out, but involving the parents in kind of the central part of that troubleshooting is going to be key.

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 you want to put yourself in parents’ shoes. What kind of BCBA would you want coming through your door? Put yourself in their shoes. Approach them the way that you would want somebody to be approaching you.

Also, even if you are working in the homes with the child, the child can’t just be your only client. The family needs to be your client. Kids don’t exist in a vacuum. They can’t be separated from their family. And so if we’re not collaborative and we’re not honoring the family’s opinions and desires for their kids, you’re going to start at a major deficit.

So put parents at the forefront. Highlight and honor what they wanted to work on. You’re going to get more buy-in and motivation from them. You’re likely going to see more progress on the part of the child. And then 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.

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