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5 Tips for Better Communication With Your Neurodivergent Child's Provider
Every time I need to advocate for my son (whom I lovingly refer to as C), I feel the pull of anxiety try to quiet my voice. It’s a struggle… I know exactly what my autistic son and my family need to make our lives easier – but sometimes it’s hard to explain it in a way “they” understand.
Who are “they”? It feels like everyone. The school administrators who wanted him to be in a self-contained classroom. The speech therapists who said, “we want him to use words, not a communication device.” The insurance company who wanted to deny our claims because – well, who knows why – it felt like they just wanted to make things harder.
If I could just learn to talk like they talk, use the words they use, know the things they know (and sometimes things they don’t know) maybe I’ll seem smart enough to be taken seriously.
Breaking Through Imposter Syndrome
I’m not new to imposter syndrome, but pushing back against professionals, who are experts in their fields, to make sure my son gets what he needs, is a whole new level of imposter syndrome.
But I’m also not one to retreat from a challenge. Instead, I do what my anxious brain loves to do – research. I write down questions based on my research. And I go to each of my appointments with a list of questions in hand. Let’s be honest… every time you meet with a new provider, you learn some new acronym, word, or phrase that requires explanation.
It’s a strategy that’s served me well for over a decade – I think because it feels collaborative, not combative.
For instance, during our first Individualized Education Program (IEP) meeting, I needed the team to remind me what Least Restrictive Environment (LRE) meant. Then I was able to ask, “is a self-contained classroom truly the least restrictive environment, when he’s never been in a classroom before?”
C ended up in a general education setting with a 1:1 aide.
Asking questions helped us get on the same page.
The Quest to Talk Like “They” Speak
Asking questions also helped me understand more, which helped me become a better advocate – with the confidence to lean into my gut instincts and rely less on agreeing to everything every professional recommended.
I also began to understand their jargon and use the words they use. And the more I understood, the better positioned I was to ask the right questions to get to the right answers for C.
I noticed less confusion and more effective communication between the people that work with C and me.
Here are 5 tips for better communication between you and your neurodivergent child’s provider:
- 1. Prepare and Prioritize: Before meetings or appointments, take the time to write down your child’s needs, strengths, and any questions you want to ask. For example, if your child struggles with transitions at school, come prepared with specific examples and suggestions, such as implementing a visual schedule to ease anxiety. If you find you have a really long list of priorities or concerns, try to pick no more than three to help keep your conversation focused.
- 2. Take Notes: Take notes during your appointments or meetings, and if you can’t do that, ask to record the conversation on your phone. This will help you reflect on what they said and prepare any follow-up questions for the next meeting. Also – remember that you don’t have to agree to anything the first time you hear or see it. You can ask for time to think about it and make an informed decision.
- 3. Express Concerns Respectfully: “You catch more flies with honey than vinegar”. If you don’t agree with something suggested, you might say, “This approach isn’t working the way we hoped. What other strategies can we try?” This opens the door to a collaborative discussion rather than a confrontational one. There is a time and place to be assertive and “no” is a full sentence. But as the saying goes, “pick your battles.”
- 4. Collaborative Problem-Solving: Remember that you are on the same team as your child’s providers. You want to approach the conversation as equal partners. For instance, when discussing an Individualized Education Plan (IEP), give concrete examples about what you know about your child. You might say, “Based on what we’ve observed at home, alternative seating arrangements work best. Could we try a standing desk?” Show that you value the professional’s input while advocating for your child’s unique needs.
- 5. Follow-Up and Stay Involved: If you don’t hear from the professional first, send a follow-up email summarizing the key points discussed and any agreed-upon actions. Staying involved and maintaining open lines of communication shows your commitment and helps keep everyone accountable – and it’s always good to have information in writing.
Moving Forward on the Advocacy Journey
Once I got comfortable asking questions and saying, “no” to things that did not feel aligned with what C needed, I wanted to do more. Share my experience with others and educate decision-makers about needed changes to make the community better for my son and other neurodivergent people.
The more I shared, the more doors opened for opportunities to share and educate. I started to apply for boards, commissions, and task forces aimed at improving services and supports for neurodivergent people.
And that experience completely changed my life. I found a passion for health and disability advocacy. I met incredible leaders and advocates dedicated to creating positive change for neurodivergent people. I continue to learn SO much from this work, and there are seats at the table for parents like you.
If you are interested in improving your advocacy skills, I am hosting a conversation for the Experiential Life Community, Raising Neurodivergent Kids: Unique Opportunities to Become a Better Advocate.
This webinar is perfect for parents and caregivers who are eager to improve their advocacy skills and want to learn ways to engage more deeply in the decision-making processes that affect their children’s lives. Whether you are just beginning your advocacy journey or are a seasoned advocate looking to expand your influence, this webinar will offer valuable insights and actionable strategies to help you make a lasting impact. You can learn more and register here.
And for Experiential Life Community Members – if you can’t make the live conversation, it will be available to view at a time that works best for you when the App launches.
If you are not on the waitlist to be part of the community for parents and caregivers raising neurodivergent kids, there’s still time! Click the button below to learn more.
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