Put yourself in the shoes of a parent of a child with autism. Whether the child is newly diagnosed or has been in treatment for a few years, that parent wants what’s best for their child. They want to be sure they get the best care and the most effective treatment. They want them to be included, loved, safe, able to communicate their wants and needs, say “I love you”, have friends. They’ll do whatever they can to go to bat for their child in every way possible. And so many parents look for help wherever they can get it—therapists, school support, friends and family, or what they find on the internet.
Combatting Myths and Memes
As a trained BCBA, you’re able to quickly discern which treatments are evidence-based and which are not, but parents may not have the same level of knowledge to separate good information from bad. Most parents are dealing with a lot of unknowns and in our online world of influencers and social media, they can all too easily fall into rabbit holes of misinformation.
There are hundreds of “treatments” for autism out there, everything from Shakespeare therapy to pig whipworm larva, lasers, and LEGO. AI is making misinformation even easier to find.
We have to recognize that aside from pseudoscience causing harm, it also depletes resources... It’s distracting. It erodes trust in different disciplines.
Dr. David Celiberti, PhD, BCBA-D, Executive Director, Association for Science in Autism Treatment Share this
Advocacy and Impact
Combating misinformation is challenging enough, but it’s even harder to counteract when it offers parents hope or paths to positive outcomes. Parent advocacy can be a valuable tool to help parents:
- sort through all the noise
- find evidence-based treatments
- identify those that are not valid
- practice how to ask for more information
When you help parents actively support and promote their children’s access to necessary services, interventions, and educational opportunities, you can counteract the damage done by unproven or pseudoscientific therapies.
When we start with a family, the first tutorial may not be on what reinforcement is and how effective it can be, but rather how parents can advocate for their children and what skills parents need.
Dr. Bridget Taylor, PsyD, BCBA-D Share this
The way we see it, parent advocacy covers more than just speaking up. It’s about giving parents the knowledge to make informed decisions. It’s also about providing them with the tools and confidence to advocate for the most appropriate, scientifically supported interventions for their child. You can play a crucial role in helping parents find their voice.
As behavior analysts, we have to be good listeners... parents’ voices matter, no matter how small the matter is.
Dr. David Celiberti Share this
Ways to Empower Parents
As a BCBA, you are uniquely positioned to equip parents with the tools they need to advocate for their children. One of the most effective ways you can help parents is by teaching them how to set clear, measurable goals for their children’s progress.
Ask for Objectives and Progress
For example, for parents with children in school systems that use IEPs, you can help by explaining how to ask for specific objectives and progress measurements, such as: “How will this goal be tracked, and what will success look like in daily life?” Encourage parents to ask questions and focus on goals that truly matter to their children’s development, like improving communication skills or fostering independence.
Learn How To Question
You can also guide parents in questioning treatment plans in other medical or therapy settings. For example, parents might learn to ask for items that back up proposed interventions or alternative therapies such as:
- data
- studies
- objective outcomes
You’re effectively helping them use the strengths of ABA to reinforce evidence-based care and feel confidence in assessing treatment options.
Role-Playing Exercises
Finally, you can help parents through role-playing exercises. By practicing conversations about what is or isn’t working during their child’s therapy programs, parents will also feel more confident in expressing their concerns and requesting changes in other contexts. Praising even small steps like asking for clarification or raising concerns helps build their confidence to advocate more effectively in the future.
Inspiring Confidence
Parental advocacy can change the trajectory of a child’s development. When parents feel heard and supported, they become empowered to push for better outcomes both inside and outside of therapy.
As a BCBA, your efforts make a difference. With the right guidance, you can inspire parents and caregivers to create lasting, positive change in their children’s lives. It’s a collaboration that can build hope and confidence for a brighter future.
Five Principles for Inspiring Parent Advocacy
- Help parents feel empowered. You can support parents in advocating for their children in various settings, from school Individualized Education Program (IEP) meetings to medical consultations. Encourage them to speak up, ask questions, and share their concerns.
- Be proactive. Beyond answering questions, you can guide parents through valid evidence-based autism treatment options and give them the tools to make confident decisions.
- Stay collaborative. By working alongside parents as partners, behavior analysts can reinforce advocacy skills in real-world scenarios, such as at home, in school, and out in the world.
- Respond with compassion. By acknowledging parents’ input, you demonstrate that their voice matters, which strengthens their ability to advocate not only in your sessions but also in other areas of their children’s lives.
- Focus on the long term. Each conversation with parents can be an opportunity to shape their advocacy skills, allowing them to become more assertive over time. Mutual respect builds the foundation for success, helping parents fight for their children’s needs appropriately in any situation.
For More Insights
Watch as Dr. Taylor and Dr. Celiberti discuss more parent advocacy tools and techniques in the full replay of our webinar: Supporting Parent Advocacy: Strategies and Considerations for Behavior Analysts.