With more than 15 years of experience as a board-certified behavior analyst (BCBA) and clinician working with children and teens with autism spectrum disorder (ASD) and their parents, I have seen first-hand how parent involvement is the key to success in intervention programs. To make an impact on these children’s lives, we need to go beyond simply applied behavior analysis (ABA) therapy sessions. This is where parents come in, reinforcing, on a day-to-day basis, the lessons and strategies applied during therapy to help their children improve social, communication, and adaptive skills.
However, getting parents to actively engage can be challenging. If parents don’t agree with the BCBA’s support for their child, fully understand the ABA process, or see their children’s progress, the child’s progress can be impacted.
Why the disconnect?
Having a child with ASD can be highly stressful. Parents have to navigate the therapies and services recommended for their child while dealing with associated day-to-day challenges, on top of everyday household responsibilities, caring for other children, and careers. While parents innately know what is best for their children, the introduction of new and unfamiliar strategies for addressing ASD – without fully understanding goals and expectations – can be overwhelming. As a result, parents may not be on board with therapies or demand other services that they’ve found online but may not be considered evidence-based.
To lessen parents’ stress, BCBAs must create an environment that encourages collaboration. Listening to parents’ concerns and providing data that underscores how specific therapies can foster progress toward goals is key. Parents then can better understand how the plan—both in therapy and reinforcement at home—is designed to set a foundation for their child to gain greater independence and success in daily life.
5 tips for balancing parent preference with evidence-based practices
To minimize any tension that exists between parental preferences and the evidence-based practices of ABA therapy, clinicians should consider taking these important steps:
1. Build a good rapport and trust with parents through clear communication and active listening. From the start, make it clear you have the child’s best interest at heart and want to be their partner in the process. Don’t assume this is implied; state it outright. Empower them and tell them you have confidence in their abilities to teach their child in partnership with you. It’s also important to practice “active listening,” which will reassure parents that you hear their concerns, take their input seriously, and want to understand what they’re going through. Refrain from judging parents, especially if you don’t have your own lived experience as a parent. Try to see their perspective whenever possible.
2. Avoid using clinical jargon. You may think that using clinical terms will show parents you have experience working with children with ASD. We see this quite a bit with newly minted BCBAs. But this can backfire. Parents may not understand what you are saying or be turned off by a perceived imbalance of power. Using understandable terms and being approachable, collaborative, and engaged will show your experience more than trying to impress with a big vocabulary.
3. Practice cultural humility. Used by other professional disciplines, BCBAs are beginning to embrace the cultural humility framework to address institutional and individual behavior that contributes to a power imbalance, the marginalization of communities, and disparities in health access and outcomes. BCBAs must understand socio-economic barriers, cultural practices, and other factors impacting families’ commitment to treatment. Continually learning about and honoring parents’ cultures, i.e., cultural competence, is not enough. BCBAs can never fully comprehend a parent’s unique experiences, so it is imperative to dispel power imbalances and elevate them to be an equal partner and an expert on their child.
4. Set goals together, get parent feedback, and then reassess frequently. While this seems like an obvious progression, it can be overlooked when you’re dealing with a large caseload. It helps to work with parents to set goals for the child – and include the child if they are able to express their own goals – and carefully outline the steps to be taken so that everyone is on the same page. Sometimes delicate discussions are needed if parents have lofty goals that may take a while to achieve or require mastery of other skills first. For example, some parents may want their children to act just like their peers or stop self-stimulatory behavior. In this case, you could share with parents the latest research and beliefs from the adult autistic community about whether that goal is realistic and beneficial to the child. As therapy progresses, it is also vital to get input from the parents on what they see on a daily basis and potentially adjust the plans as either goals are attained or therapies are not progressing as planned.
5. When in doubt, review the data in a user-friendly way. When parents believe they are not getting results, they’ll often seek other approaches that are not evidence-based. This is why it’s important to leverage data. Parents may not see the small improvements their children are making since they are with them every day. Data from registered behavior technicians or information documented by parents – such as frequency and duration of tantrums or potty training attempts – can be used to show progress when it may not be readily apparent. At the same time, a lack of progress will be evident in the data, too, leading to honest discussions with parents about potential changes to the plan on the part of the ABA team, the family, or both. Using visuals, such as graphs and charts, can help parents more easily understand your data analysis.
When it comes to ABA therapy, parents play a pivotal role. They must be encouraged to work hand-in-hand with BCBAs, participating in their child’s therapy and being empowered to actively apply these strategies at home. Effectively engaging parents will positively impact their children, helping foster improvement towards their goals – including self-care, social interactions, and other life skills. By applying these five tips, children will have constant reinforcement both in and outside of therapy. This will help them remember skills and apply them in real-life situations more quickly, fostering greater independence and success in daily life.
Angela Nelson is a behavior analyst and health care executive.
