Reducing Stigma and Setting New Standards for the Neurodivergent Community

Jun 6, 2022 | Features, Recent Stories

Getting our whole society to understand neurodivergence is no small task. But we can each work to more openly and genuinely embrace our kids.

Special to the Philanthropy Journal

By Dr. Andrew Kahn

​I’ll be the first to say that being neurodivergent isn’t easy.

Growing up with ADHD in the ’70s, I was constantly called “lazy.” My teachers in the New York City public schools told me that I “needed to work harder.” Nobody talked about learning and thinking differences (LTDs) back then. Those messages and that lack of awareness shook my confidence. And there weren’t many resources to help me understand myself or the challenges I was facing. As a result, I struggled with anxiety and lowered academic confidence that took me decades to overcome. You see, I know that my ADHD wiring will always be a part of who I am. But other people didn’t understand, and their inaccurate beliefs about me as a person could have demolished any chances I had to thrive in school and in life.

While we’ve made progress around inclusivity for neurodivergent people, the reality is that there are over 70 million people in the United States who have LTDs — that’s 1 in 5 of your friends, relatives, students, and colleagues. And they’re subject to the same challenges I faced 40-plus years ago. Thankfully, now there are more resources to help parents of children with LTDs learn about their differences and shape their path for success. I’m proud to be part of Understood.org, working with a team that’s committed to battling stigma and creating community and resources. We’re working every day to ensure that people with LTDs are heard, seen, valued, and supported.

But our new research, the Understood.org Neurodiversity and Stigma Study, uncovered that people with LTDs are still stigmatized, and parents continue to hold misconceptions. While 90% of parents acknowledged that LTDs exist, 60% of parents reported that they’ve seen their child or another child with LTDs referred to as “lazy” or “not smart.” Not surprisingly, concern about stigma has resulted in more than half (55%) of parents with neurodivergent children admitting that they’re afraid to tell others about their child’s differences.

Photo Credit Understood.org

These findings clearly show that while parents may seem accepting of neurodiversity on the surface, there are still real barriers to building a culture of true acceptance and inclusivity.

At Understood.org, we want to help people with LTDs learn about themselves (or their children) and to be able to advocate for what they need to thrive emotionally, socially, academically, and professionally. We want them to develop a healthy sense of self and become understood. And one of the first steps to this is combating stigma head-on.

This is why we’ve introduced our “Be the Reason” campaign — an initiative that shines a light on the misconceptions around LTDs. It educates parents about neurodiversity, and it provides them with tangible resources and tools to engage with their children around these challenges.

  • The campaign leads with the “Be the Reason” film, which highlights the perspective of a child with LTDs and her struggle to gain necessary support and understanding from her well-intentioned parents.
  • In addition to the film and other real stories from neurodivergent children, parents can access an activity kit with tips and conversation-starters to help them spark engagement with their children and “be the reason” their child gets the support they need.
  • And knowing how critical community is to helping parents feel supported and not alone, we engaged with The Holderness Family to produce an original song and lead a #YouCanBeTheReason TikTok challenge for parents to share how they have been the reason their child thrives. It’s been an amazingly fun and light way to engage others around what can often feel like a scary or overwhelming conversation.

Ultimately, though, being the reason your child thrives comes down to being present in their life — even if you don’t have all of the answers or know exactly what to do. Here are a few initial steps for supporting your child and combating stigma along the way:

  1. Have a conversation with your child. Ask your child how they’re feeling and how you can help. Using open-ended questions can help your child really think about how they’re doing and give you more insightful answers. Showing that you’re there and ready to work through things with them is critical.
  2. Talk to other caregivers in your child’s life. Communicating with your child’s teachers, coaches, tutors, and health care providers can give you insight into how your child is feeling in all aspects of life.
  3. Encourage easy self-calming practices. LTDs don’t only impact people academically and professionally, but also socially, emotionally, and even physically. When your child is stressed or frustrated, simple practices like deep breathing, stretching, and physical movement can help calm their bodies and address physical manifestations of stress or anxiety.
  4. Observe and track. Observing and tracking your child’s emotional responses to difficult situations together will help identify trends and let them develop expressive language to convey their feelings and what they need help with.

Getting our whole society to understand neurodivergence is no small task. But we can each work to more openly and genuinely embrace our kids. We can each learn accurate information and share it with others. And with empathy and a desire to support people with LTDs, we can build a world where everyone, regardless of difference, can thrive.

ABOUT THE AUTHOR

Dr. Andrew Kahn is a licensed psychologist specializing in working with individuals who think and learn differently. In his role as a subject matter expert in psychology and learning, Dr. Kahn focuses on ADHD, autism spectrum disorders, anxiety, general learning and behavioral challenges, and learning and social-emotional functioning. 

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