REEL Stanford Neurodiversity Student Panel: The K-12 Student Experience
On Oct 17, 2020, the Stanford Neurodiversity Summit and REEL hosted neurodivergent panelists—including high school and college students as well as an alumna and educator at a school for twice-exceptional learners—who shared their experiences as K-12 students, including what neurodiversity means to them, what neurodiversity-related advocacy or education looks like from their perspectives, and which educational support structures have been most helpful. We hope these voices of the neurodivergent will drive action items for how we can improve K-12 education for neurodiverse learners.
For those who missed this inspirational panel, we have summarized the key takeaways from our “loud and proud” speakers. You can watch the complete recording here: https://tinyurl.com/K12NeurodiversityPanel.
Although our panelists had a wide variety of educational experiences, the most commonly mentioned support in their K-12 years were educators who were accepting of differences, were patient and understanding, and created an environment where everyone could be themselves. These educators became a trusted place for students to go when they were feeling pressured, bullied, and misunderstood.
Zachary talks to teachers during his passing period when he feels stressed. “There is one teacher open to questions not only about math; he understands me the most, and makes me feel safe.”
Serena finds it most helpful when teachers are very accepting of her accommodations and understand her needs and strengths so that she feels comfortable talking about her differences. She cautioned teachers not to assume behavior is “attention seeking” when it’s really the student struggling.
Amy pointed out “Being guilted or pressured or cajoled doesn’t work when a student is struggling or has a barrier; it heightens frustration and makes learning and school anxiety-inducing. What works is understanding, communication, respect for differences, being willing to negotiate and scaffold, and finding what the accommodations can be that make the learning experiences more naturalistic and enjoyable.” As a teacher, Amy provides her students with three choices for how they can complete any assignment and lets students lead.
Allison’s 3rd grade teacher was the first person who took what she was saying seriously, told her it was ok that she thought about things differently, and ok to be herself.
Lucy’s second grade teacher celebrated and embraced children’s intense interest areas by creating “classroom expert contracts” so a child could teach the class about their passion. Her high school teacher gently helped her focus her writing and overcome rigid thinking. “When teachers are attentive to student needs and they can adapt teaching methods, this benefits neurodivergent, neurotypical students, and undercover autistics.”
Speaking of undercover diagnoses, many of the panelists were not diagnosed until high school or college. Being diagnosed often provided relief, as they finally had an explanation for their struggles and stopped feeling broken. Some also experienced roadblocks to diagnosis because they were outwardly achieving or due to cultural stigma.
Lucy says “if I had been diagnosed earlier, I may have seen myself as different and not defective from an earlier age.” Lucy hopes that more girls will receive their diagnosis at an earlier age—she advises educators and parents to read about signs of autism in girls.
Amy discussed that criteria for diagnosis are gendered and created without asking autistic people about their experiences. Her diagnosis helped her connect to her community for support and answers, and to hear about positive autistic traits for the first time.
Ila shares that before she was diagnosed, she felt she didn’t belong, and that there was something wrong with her. “Putting a name to what I was feeling really made things so much clearer.” It helped her figure out her own learning style, what worked best for her, and how she could help herself.
For Allison, getting a diagnosis answered a lot of questions, gave her answers to questions she hadn’t thought to ask, and provided known ways for her to access helpful support systems—such as her beloved service dog.
Serena shared that not only did adults not believe she was struggling because she was outwardly achieving, but also in her Asian American culture, ADHD is stigmatized so she had to fight to be diagnosed. Her parents didn’t want her to have a label, “But without the label for ADHD, I was also given many other labels, like being a problem child or being disruptive on purpose, or just not being what I was supposed to be or other negative labels, which neurodiversity is really not if you really understand it.”
Believe Me! Accommodations and Self Advocacy
Receiving their diagnosis helped many of the panelists figure out how they learn and what accommodations they need to level the playing field. They also learned they have to advocate for themselves in the classroom to get what they need. Because the panelists have gifts in some areas and appear to be getting by or even high-achieving, many struggled to get the support they needed.
Serena learned which behaviors were not socially acceptable in class and found ways around them, so she didn’t clearly fit the profile for ADHD. Adults didn’t believe she was struggling until she pushed for a diagnosis. Her accommodations have helped her show what she can truly do. “Accommodations leveled my playing field...extra time compensates for the time I spend untying my thoughts before I can even start to think about the materials.”
Allison had teachers who did not believe the accommodations she requested were needed because a different autistic student didn’t need them. “Teachers, it’s not: you’re not autistic or ADHD because you’re not like [this other student]. If you meet one neurodiverse person, you meet one neurodiverse person.” She also adds, “Not listening or believing can be just as hurtful as teasing or saying mean things.”
Ila says she was quiet, did her work and got decent grades, so her teachers didn’t think she needed testing or a diagnosis. She had to fight her school for the supports she needed. Ila wishes students were taught how to self advocate at a really young age.
Passions, Community, and Socializing
Several panelists credit their passions for getting them through difficult times and saving their self-esteem. Their passions also connect them to a community of people with similar interests. Some cautioned parents not to put neurotypical social expectations on their neurodiverse kids.
Ila mentioned that music, singing, and performing help her with everything.
Serena said music gets her through negative educational experiences. Despite working so hard at school, she sometimes wouldn’t do well or would get into trouble, but music was a place she could do well and channel her difficulties.
Amy shared “Find a network of people that have something in common with you—your autstic special interest group is the key to lifelong friendships.” Building a community of people who understand you and where you can be your authentic self and be loved is critical. “Struggling in school is hard, but not feeling like you’re part of a community is harder.”
Allison says that with the ability to find people online you can “get people who you feel like you can talk to and other people who are neurodiverse as well in your life. Once you get to that point, it does get a lot better. Get a squad that you can really have to help you through whatever comes your way.”
However, Lucy and Amy both caution parents not to place their own social expectations on their children. Lucy says her well-meaning parents perceived her as lonely and pushed her to spend time with friends, but she was ok alone. Amy echoed “Don’t assume because I’m alone I’m lonely”.
Using Their Experiences to Help Others
In addition to speaking out about neurodiversity, this inspiring panel has turned their struggles into advocacy for other neurodiverse students.
Serena created NeurodiverCity to support student advocacy and creativity after feeling it was hard for her to connect with other neurodiverse students due to stigma in her community.
Lucy writes a blog, lucidity, where she shares her experiences with mental health, autism college hacks, and advice. She also tutors kids for their college applications and the on-boarding process.
Ila started an advocacy group for her school district after attending the Stanford Neurodiversity Project’s high school advocacy camp.
Zachary was chairman of a Neurodiversity club at Palo Alto High School.
After surviving severe bullying at her previous schools, Allison wanted to give students at her current school, Fusion Academy (Palo Alto), a place to feel safe, so she founded a student leadership team.
Amy is a teacher at Bridges Academy, a school for neurodiverse/2e students, where she creates a positive and nurturing environment for her students. She says it feels like being at home and that her students are her family.
Bringing Neurodiverse Voices to the Forefront and Reducing Stigma
All of the panelists agree that more neurodiverse voices need to be brought to the forefront of this discussion. As Amy stated so eloquently, “We see neurodiversity as being so different from other forms of marginalization. I would never run a group of LGBTQ people and have only straight people making policy. Our motto is ‘Nothing about us without us.’ You can’t make meaningful policy without including the voices of the people who are most impacted.”
The panelists would like to remove the stigma associated with neurodiversity and help parents, educators, and fellow students “be more accepting of the prevalence and different presentations of neurodiversity” (Serena). As Zachary says, “Neurodiversity is about inclusiveness. It’s not about who is different, rather about accepting differences. We’re all different in a good way.” Ila says “It’s hard to be accepted as yourself with so much stigma.” Allison would like to see educators strictly enforce zero tolerance bullying policies. Amy sums it up, “The issues stem from failure to embrace that people's brains will be different, not deficient. We need to change society’s narrative about what it means to be human, build accommodations into our normal schools and experiences, and not make being neurodiverse an ‘othering’ element. This will alleviate bullying difficulties with education and employment. Everyone has to get on board.”